Getting worse with Antibiotics?

[PIK]

I think I have/had PANDAS. Started as an anorexia type obsession with counting calories at 12. Sudden onset OCD obsessions/compulsions overnight after exposure to strep at 14. Rheumatic fever at 16, glomerlarnephritis at 27. Treated glomerularnephritis with joint pain, with one-month course of Penicillin. Went absolutely "crazy" the day after resolution of the glomerularnephritis. NOTHING worked for three years. Finally went on clomipramine (Anafranil) with complete resolution of symptoms the next day or two. Still have elevated ASO and dnase-B in the 450 range. Has anyone heard of getting worse with antibiotics? The poop really hit the fan. The OCD just turned into psychosis. Please get in touch if anyone has heard of this. I am looking into seeing a doctor familiar with PANDAS. Thanks.

[MomWithOCDSon]

Usually, the anecdotal evidence indicates either no change with abx (if it's the wrong one) or improvement with abx (if it's the right one). I've seen lots of accounts of various psych drugs and even some supplements resulting in dramatic behavioral/psychological changes, but I cannot recall any that were specifically tied to abx.

 

So that being said, I'd be looking at what else might have been happening at the time you were taking the abx. Was anything else changed? Any other meds, environmental components, health issues shifting, etc.? Did you have any titers measured around the time you think the abx made you worse? I'm wondering, for instance, if you either contracted another microbe that the penicillin was ineffective against?

 

Some of us have also found (again, anecdotally) that when our PANDAS/PANS kids are sick, their behavioral symptoms are actually minimized. There are lots of theories about fever being beneficial, etc.

 

In the end, especially for older kids and adults, this situation is complex and seems to have a lot of moving parts. Interventions that work for some, do not seem to work for others, and the same with supports, like supplements and/or psych meds. My PANDAS DS, for instance, responded VERY badly to anafranil, which we tried before we knew it was PANDAS. His response to abx, meanwhile, was just short of miraculous.

 

Are you still taking anafranil now? Still completely OCD free? If so, what is compelling you down the PANDAS/PANS path?

[PIK]

I am still pretty much symptom free with Anafranil 100 mg per day and perphenazine 6 mg per day. It just seems to me that I've had every form of strep related illness (rheumatic fever, glomerularnephritis, OCD, guttate psoriasis, joint pain) with elevated ASO titers and anti-dnase B and I think it all ties in together. I just want the titers lowered to normal levels, and I've been seeing a rheumatologist for this. I just want a true diagnosis as far as my mental health is concerned. Reading everyone's story only confirms the diagnosis of PANDAS in my mind. This is something that just ruined my life from like 12 to 33, in every imaginable way. I don't believe for a minute that I suffer from schizophrenia, as has been suggested, as this does NOT go away, and certainly not with Anafranil, and it is this drug that made everything go away. I had been on very high doses of perphenazine before the Anafranil was started, and it didn't help. There was almost immediate resolution of all symptomatology with clomipramine. I just want answers, and I want a doctor that know what they're talking about. I understand that pretty much nothing was known about PANDAS in the 90's when this started, but I know they knew about it when I was hospitalized at 28, and I TOLD them that this is what I thought I had, and they did NOT listen. They wouldn't even listen to OCD. They immediately said schizophrenia and tortured me for three years on every imaginable antipsychotic, none of which helped.

[PIK]

I just wonder if swift lowering of ASO antibodies with antibiotics after elevated titers for years led to my body just "freaking out", which led to the poop hitting the fan. I mean, like getting worse before getting better sort of thing. If my body was used to dealing with the strep for years and then didn't know how to respond when it was gone.

[searching_for_help]

Our daughter had been on many different abx, without much noticeable improvement, but when she went on a very strong dose of Zithromax, she got really bad on day 3 and 4 (we assumed she was herxing), and then her mood got much better. She actually laughs and smiles sometimes now, BUT, she still has her OCD intrusive thoughts, eating disorder and compulsive exercise. But it's still a better place than she was.

 

Her doc had put her on the zith due to myco p. She used to have a lot of strep when she was young, and I'm sure that's what started the nightmare, but she was in bad shape last year after having what we think was mono. She's had no symptoms of mycop - but blood work had doc decide to treat for that with the zith. We had heard that sometimes you get worse before you get better. I think PANDAS/PANS kids react to all kinds of things, and I know our daughter rarely shows physical symptoms of an illness. Other than fatigue, her symptoms are usually a worsening in mental problems, like anxiety, frequent urination, depression, etc.

 

So for us, the worsening from abx was only a day or two before seeing some improvement.

BTW - did you struggle with the eating disorder the whole time? If so, did the Anafranil help that as well? I just CAN'T get the last 10 pounds or so on that she needs. She is terrified to gain weight.

[PIK]

No I did not struggle with the eating disorder the whole time at all. It started about two years before the strep exposure I am sure of, and the subsequent OCD, and gradually faded away. It's as if the whole "religion" of OCD that started at age 14 took the place of the obsessive calorie counting and body weight concerns.

[PIK]

By the way, I found the name, address, and phone number of a Dr. Susan Swedo in Bethesda Maryland. From what I understand, she is the one who postulated the whole theory of PANDAS. Does anyone know anything about her? Does she see patients?

[MomWithOCDSon]

By the way, I found the name, address, and phone number of a Dr. Susan Swedo in Bethesda Maryland. From what I understand, she is the one who postulated the whole theory of PANDAS. Does anyone know anything about her? Does she see patients?

 

Dr. Swedo is a researcher at NIMH, and beyond her research subjects in clinical trials, she does not normally see patients.

 

There's a list of doctors among the pinned threads on the PANDAS forum here, so I would start there in my search for a doctor who can help you.

 

As for your tumultuous reaction to the abx being part of the "rubber band snap" of your body (and mind) finally getting some relief from the onslaught of the strep . . . I suppose that's possible. It's just not what you typically hear about. Was the penicillin a very high dosage, and was it a particularly long course? With a longer course, I could see how there would more likely be sort of a "herx" reaction. Or, more likely, given as strep can go intracellular and can also hide in biofilms, with a longer course of abx, it's possible that "fresh" strep was being released by the abx and potentially other therapies being used to combat the glomerularnephritis, and that was, in turn, revving up your immune system and the antibody response.

 

I completely agree that your connection with strep would be consistent with a PANDAS/PANs condition, so I'm not trying to discourage you from going down this path at all. Just sharing with you that, in our experience with a kid who was 12 at the time we found it, it's rarely a completely clear, black and white road.

 

Just FYI, in our case, we think our DS had PANDAS since at least the age of 3; it was harder to track/identify because he was classically asymptomatic for strep (no physical systems, only psychological ones). By the time we started treating him with abx at 12, I'd wager that he had a ton of strep hiding out in biofilms and various hard-to-get-to place (like his sinuses). In the end, he was on abx for 2 years before we could pull him off successfully without him "snapping" back behaviorally.

 

Good luck!

[PIK]

What is "biolfim"

 

I forced the doctor to prescribe penicillin 500 mg twice per day for one month because I simply felt so ill and it had been prescribed to me by a doctor in Europe, whom I did not listen to. I took 500 mg three times per day because I could no longer deal with the fever and joint pain and I figured I would either kill whatever was making me ill, or I would die. I simply couldn't take it any longer and I think I actually came close to dying at one point due to kidney failure before finally convincing the doctor to prescribe penicillin. She insisted nothing was wrong, when something clearly WAS wrong. She told me the 99.7 temp I was running for months was not a fever. Furthermore, convinced I had contracted HIV, I went to see an Infectious Disease specialist, who basically told me I was a hypochondriac and proceeded to throw me out of her office.

[PIK]

What is interesting as well is that all strep cultures done have been negative.

[MomWithOCDSon]

PIK --

 

"Biofilms" are basically what they sound like . . . sort of slimy, mucousy films that can form inside the body and harbor/protect some micro-organisms. Have you heard about the use of n-acetylcystein (NAC) for OCD? Well, one of the theories behind why it can be of some help is that, above and beyond potentially modulating glutamate, NAC can also break down biofilms and render microbes vulnerable again to medications, supplements, gut enzymes, etc. Here are a couple of links:

 

http://www.stanford.edu/~amatin/MatinLabHomePage/Biofilm.htm

 

http://www.ncbi.nlm.nih.gov/pubmed/8561477

 

http://www.biomedcentral.com/1471-2180/10/140

 

All of our DS's strep cultures (throat) came back negative, as well, though given all of his upper respiratory issues, I suspect that if we'd gone to the extent of having his sinuses scoped, we may have found some there. We found his strep/PANDAS connection through titer blood tests, not unlike you.

 

Finally, if I had a nickel for every time a medical or psych professional told me I was either a) making something out of nothing, reading too much on the internet, c) dumber than them because they had a degree hanging on their wall(s), I'd be a very wealthy woman indeed!

 

I don't know if you've had a chance to take a look at that list of PANDAS docs yet or not, but given the tone and content of your posts, I'm leaning toward recommending Dr. Trifiletti. He is tirelessly curious, adapts to each patient's particular situation and symptomology, open-minded, and persistent. He's also overworked and understaffed, but if you can soldier through that bit of it, I think he'd suit you well.

[PIK]

Thank you. Where are the doctors listed on this page. I can't seem to find them.

[MomWithOCDSon]

Thank you. Where are the doctors listed on this page. I can't seem to find them.

 

Here you go.

 

http://www.latitudes.org/forums/index.php?showtopic=5023