OCD worsen with antibiotics and prednisone

[Louisa]

Hi

Please help my son. I am desperate!

My son used to have mild to moderate OCD and controlled with Zoloft 200mg. His OCD basically did not affect his daily function.

 

April of Last year, he had to take antibiotics for other purpose, but his OCD increased a lot. After the treatment course, his OCD relieved a little bit.

 

In this year April, his OCD increased significantly without a clue. Blood tests showed high level of Strep A antibodies. Then we visited Dr. T for checking for PANDAS/PANS. He first gave him Augmentin and Ibuprofen, but OCD increased instead. At the same time, he ordered a comprehensive blood test which showed he mainly have high level of Strep A antibodies, no Lyme infection. Then he prescribed Clindamycin and Rifampin, his OCD got worse again. Lastly, Dr. T ordered Cunningham panel of tests, which indicated my son has autoimmune disorder. Dr. T. then gave him prednisone 50mg for 10 days and expected a speedy recovery after 2 to 3 days. Unfortunately, his OCD continued to get worse and even worse than before his treatment with antibiotics. Before the treatment, he could still make it to school. After the treatment, he cannot make it at all.

 

Now He has to take more than 3 hours for morning routine due to OCD.

 

All this blood test results seemed to suggest PANS but the conventional treatment does not help at all and even make his OCD worse. Please help me make sense of it. I am desperate.

 

Thanks

Louisa

[jan251]

My two cents on a couple of possible angles to consider: (1) lyme - was the test through Igenex or a regular lab? (2) immune system issue. If there hasn't been testing of the immune system - IgG levels and so forth - I'd look at that next. As much as antibiotics are a first-line treatment, there really is no agreed-upon, conventional treatment for PANDAS. Besides antibiotics, IVIg has also been studied. My guess is that many people may need a multi-faceted approach to treatment.

 

If strep is still around, I'd want to be on some antibiotic if possible, for a lengthy duration. It would not be unusual to need to try a few different antibiotics before finding one that at least didn't hurt even if it didn't clearly improve the ocd.

 

FWIW, my child tends to respond similarly - either the same or worse on antibiotics and worse with steroids. He had a positive lyme test through Igenex but negative through Labcorp. Unfortunately, treating lyme and confections led to no improvement. We are now working on IVIg for an immune deficiency. We don't know yet whether we'll have to return to lyme treatment after IVIg (eh, I often do some herbal treatments on the side, but no major antibiotics at this time).

[Louisa]

My two cents on a couple of possible angles to consider: (1) lyme - was the test through Igenex or a regular lab? (2) immune system issue. If there hasn't been testing of the immune system - IgG levels and so forth - I'd look at that next. As much as antibiotics are a first-line treatment, there really is no agreed-upon, conventional treatment for PANDAS. Besides antibiotics, IVIg has also been studied. My guess is that many people may need a multi-faceted approach to treatment.

 

If strep is still around, I'd want to be on some antibiotic if possible, for a lengthy duration. It would not be unusual to need to try a few different antibiotics before finding one that at least didn't hurt even if it didn't clearly improve the ocd.

 

FWIW, my child tends to respond similarly - either the same or worse on antibiotics and worse with steroids. He had a positive lyme test through Igenex but negative through Labcorp. Unfortunately, treating lyme and confections led to no improvement. We are now working on IVIg for an immune deficiency. We don't know yet whether we'll have to return to lyme treatment after IVIg (eh, I often do some herbal treatments on the side, but no major antibiotics at this time).

His lyme test was done in Quest Diagnostics and showed negative. So you suggested we should do it again through Igenex?

He also had high level of Sjogren's AB, which Dr. T noticed but did not think he needed to do anything about it yet. Do you know anything about that?

I am also thinking whether his OCD and high level of strep A antibodies in fact are independent in his case. Could it be?

 

His IGA and IGG level were normal except for IGG subclass 3 a little high.

 

We are just too scared to let him try different antibiotics or to try for a longer time because he responded so badly every time and you see his OCD deteriorate with the treatment. How long do you think is sufficient to see the effect?

 

Dr. T also mentioned IVIG. If he does not respond to prednisone, would IVIG be helpful? I learnt about IVIG. Although the literature and patients feedback showed it helps most of the time and does not have terrible side effect in general, we just feel it is so invasive and are not sure if it is worth to try.

 

Your feedback and experienc are greatly appreciateded

[jan251]

We haven't yet found a path to healing for our child, so my thoughts aren't worth much.

 

Igenex is considered much more reliable for lyme, though I'm still not sure what to think myself. Our insurance did not cover the Igenex test. Our ds got worse with certain antibiotics (such as minocycline) that ought to be good for lyme; perhaps our ds does have lyme, but the treatment path is daunting even though we have done months of antibiotics and herbal treatments to no effect.

 

I don't know anything about Sjorgen AB, though isn't that an autoimmune issue or is it an infection?

 

I would not assume that high strep antibodies and OCD are independent even though there isn't always an exact correlation between symptoms and rise/fall of antibodies. I'd take the high strep antibodies as evidence that there might still be ongoing strep lurking, and ongoing strep could, in turn, contribute to the OCD. I'd ask the doctor about trying different antibiotics (e.g. zithromax, omnicef, etc.) to try to find one that didn't make him worse and yet might still address strep. Making the OCD worse beyond a few days is not a viable treatment path, at least in our house, as it's difficult enough to tolerate the OCD even when it isn't "worse."

 

On non-response to prednisone vs trying IVIg, I can't say. Our ds did not respond to prednisone - all it did was make him cranky - and yet after over a year without relief, we reached a point in the road where we were ready to try IVIg. We are praying and keeping our fingers crossed that this will produce results. What I feel confused about is whether we will need to add more antibiotics to kill off infections (strep, mycoplasma, lyme) once the immune system is working better.

 

Generally, I might assume that OCD worsening with antibiotics and prednisone is a sign that there is some type of infection, or multiple infections, present. How to go about treating is another question, but I'd keep trying.

Edited August 14, 2016 by jan251

[Gpookie]

I'm not sure what the details of your case are, but when my kids had a significant increase in symptoms on antibiotics or prednisone, we tripled down on detox. With prednisone also, it was that while treating the inflammation/PANDAS, it was kicking up the yeast symtpoms. We learned over the years that the list of Pandas symptoms we had made were not all pandas, but some were yeast (hyperactivity & silliness which calmed with garlic pills and detox) and some were die-off (general malaise, depression, moody which calmed with heavy detox). The pandas symptoms were the OcD, ODD, corpolalia movement issues/SC, intrusive thoughts, cognitive decline and handwriting issues). Ivig and antibiotics helped the pandas symptoms Once we learned the different symptom sets for our kids, we learned difference we could adjust the treatments and eventually got them back up to 200% with blips that only we as the parents notice. Hope this helps?

[mama2alex]

Dr. T is not a Lyme specialist and uses the CDC/Infectious Disease Society of America testing and diagnostic guidelines, which miss many, possibly most, cases of a Lyme and coinfections. It looks like he didn't even look for coinfections, which is a big mistake. Bartonella and Babesia can cause a lot of PANDAS-like symptoms.

 

If your child has Lyme and coinfections, Augmentin, Clindamycin and Rifampin could all cause a herxheimer reaction, which is is basically a worsening of symptoms due to rapid die-off of the bugs that overwhelms the body's detox systems. Also, if your child has chronic infections, prednisone suppresses the immune system, which could also cause symptoms to increase.

 

Your best bet to determine if Lyme and co is part of the picture is to see an integrative LLMD who will test through Igenex for Lyme, but will also test for coinfections such as Bartonella, Babesia, Erlichia, etc. They will also know how to make a clinical diagnosis taking tests into account but not relying on them 100%. Also, they'll know how to support the body with supplements and herbals to minimize the herxheimer reaction.

Edited August 14, 2016 by mama2alex

[Louisa]

Dr. T is not a Lyme specialist and uses the CDC/Infectious Disease Society of America testing and diagnostic guidelines, which miss many, possibly most, cases of a Lyme and coinfections. It looks like he didn't even look for coinfections, which is a big mistake. Bartonella and Babesia can cause a lot of PANDAS-like symptoms.

 

If your child has Lyme and coinfections, Augmentin, Clindamycin and Rifampin could all cause a herxheimer reaction, which is is basically a worsening of symptoms due to rapid die-off of the bugs that overwhelms the body's detox systems. Also, if your child has chronic infections, prednisone suppresses the immune system, which could also cause symptoms to increase.

 

Your best bet to determine if Lyme and co is part of the picture is to see an integrative LLMD who will test through Igenex for Lyme, but will also test for coinfections such as Bartonella, Babesia, Erlichia, etc. They will also know how to make a clinical diagnosis taking tests into account but not relying on them 100%. Also, they'll know how to support the body with supplements and herbals to minimize the herxheimer reaction.

Thanks for the information which really fit into my son's situation. I feel like I am seeing a light again. His Lyme and Babesia tests were negative with Quest Diagnostics. Definitely I will explore getting the Lyme test again with Igenex. Do you know how much they charge for the test?

 

Does anyone know of good integrative LLMD in new Jersey or nearby states.

 

Thank you

[vvny]

Please share update for your case as we are also seeing Dr.T soon. My son also has sudden flare up of OCD and Tics out of nowhere ! His bloodwork also suggests PANS and out of desperation I started him on antibiotic omnicef and ib brufen before we see Dr.T. He seems 20% better.Maybe you can ask Dr.T for this antibiotic as my son is allergic to azithromycin and he did not do well on augmentin too.

[Louisa]

My son was on Amoxicillin, Augmentin, Clindamycin and Rifampin for 10 days in different times, and on prednisone for 10 days after the result was positive in Cunningham tests (July 2016). For some reason, his OCD became much worse than before the treatment. If it is due to a herxheimer reaction, should I have seen at least some improvement within 10 days of time??

 

During my 3 visits, Dr. T was very nice to spend time answering all my questions and seemed very confidence in being able to help my son. Unfortunately with all the medicine, his OCD was worse.

 

Between the visits, I have called his office a few times about my son’s adverse reaction to the antibiotics and prednisone. They were either very late to respond or not responsive at all. However, when I asked to set up a follow up appointment, they replied right away.

 

I know Dr. T is a very knowledgeable in treating PANDAS, but with my experience with his office, I am not sure if I want to go back. I would want to find an integrative doctor who also knows how to support my son with natural supplements in addition to medicine so that the side effect of the medicine can be minimized.

 

Did anyone work with Dr. Steven Bock, an integrative LLMD in New York?

I am thinking to get consultation with him. Although my son's blood tests prescribed by DR. T showed negative in lyme infection, I am not sure if quest diagnostics was able to accurately test for his lyme infection and if his herxheimer reaction was due to lyme disease.

[MomWithOCDSon]

Louisa --

 

I haven't personally worked with Dr. Bock, but I've read his book ("Healing the New Childhood Epidemics"), have heard him speak at conferences, and had the pleasure of meeting him and talking with him for a few minutes at a conference a couple of years ago. Then I shared a lunch break with a family who's son is treated by Dr. Bock; they raved about him.

 

All of that is to say, I think seeking his advice would be a great move. He is very impressive and knowledgeable.

 

Good luck!

[Louisa]

Nancy

 

The author of the book is Kenneth Bock, not Steven Bock. Are they related? Did you refer to Kenneth Bock or Steven Bock in your reply?

[MomWithOCDSon]

Oh yes, you're correct! I was thinking of Kenneth Bock, rather than Steven. Sorry! Are they related? I know Kenneth Bock's practice is also in New York State, which added to my confusion.

[jan251]

He also had high level of Sjogren's AB, which Dr. T noticed but did not think he needed to do anything about it yet.

 

For what it's worth, I happened to read an article today about a child who had Sjogren's antibodies though I'm not sure how that was related to her case - she had autoimmune encephalitis.

 

Maybe it's just another indication to look in an immune system direction...

Edited August 21, 2016 by jan251

[Louisa]

Thanks for your information

 

My son has Sjogren's AB SS-A negative and SS-B positive.

 

Just found out the research paper (http://www.ncbi.nlm.nih.gov/pubmed/25735642) with conclusion as below

 

The presence of anti-SSB, without anti-SSA antibodies, had no significant association with SS phenotypic features, relative to seronegative participants. The solitary presence of anti-SSB antibodies does not provide any more support than negative serology for the diagnosis of SS. This serological profile should thus be interpreted cautiously in clinical practice and potentially eliminated from future classification criteria.

[mmw]

I am usually more of a lurker and do not post much. But I believe I had Pandas as a child and have pretty bad OCD. I have had horrible exasperbations with both rifampin and clindamycin. The rifampin interacted with my OCD medicine but I had the exact same worsening with clindamycin and could find no interactions. I have had strep several times lately (I have two pandas kids) and was trying to knock it out. My dd who does not have OCD takes rifampin with no problem but was allergic to clindamycin. Right now we are having good luck with Keflex after Augmentin failed her. I can also take zithromax with no issue. HTH.

Edited August 28, 2016 by mmw