High ASO and Penicillin

[PIK]

Please help me everybody. I've written here before. My ASO was as high as 1600 about one and one-half years ago. I saw a rheumatologist who put me on penicillin - 500 mg 3 per day for 10 days then 1 pill per day long-term. I started the course but felt ill, and he told me to stop it. I tried taking the penicillin on and off but it always made me feel ill. I felt like I had meningitis and had very bad headaches, even went as far as going to ER for MRI of the brain because I thought I had a tumor

 

I saw Dr. T who put me on a course of clindamycin I think and rifampin for ten days. He wasn't helpful at all, but what's good is that he tested for like EVERYTHING, and I don't seem to have anything else going on with my health. I'm fairly certain I've had rheumatic fever in the past and glomerularnephritis. I did have severe issues with OCD and also some hallucinations etc. They went as far as telling me I was schizophrenia. I never believed it, and all psychiatric symptoms have just about vanished. I am on Anafranil and a super low dose of perpehanzine, both of which are being reduced more and more by psychiatrist.

 

The ASO has slowly come down, now it's at about 800 something. I started for about a week now, taking Penicillin 500 mg per day the way the rheumatologist had first suggested. It makes me feel ill, but I'm starting to think that it might truly be a Herxheimer reaction, and now an allergic type reaction to the penicillin. It gives me a headache and joint pains, with pain in my cervical area, but here is what makes me think it's Herxing - my TONSILS and EARS hurt, as if I have a strep throat again, thoughI don't. I've even had slight moisture in the morning from my ears, though my doc says there's nothing wrong with my ears. Does anyone have any input? I've decided to stay on the penicillin and fight, but today I just felt SOO ill. I slept all day. What has been really helpful, more than anything, is ibuprofen. I don't like taking meds, but I've been taking it lately. And today I took an 800 mg pill, and it really made me feel better. The tonsilar and ear pain stopped after a nap, and even the neck pain stopped, which feels like some kind of vice tightening its grip on my neck.

 

Please enlighten me with thoughts. I've just about given up discussing it with doctors, because I don't think they really know what they're dealing with.

[EAMom]

Hi,

Some thoughts:

1) Per Swedo Penicillin must be given at least 2x daily (it has a short half-life)

2) I would be worried about Lyme/tick borne infections with the headache and joint pains. There are lots of false negatives with Lyme tests.

3) I am assuming you are an adult? How old are you? I wonder about tonsillectomy, here's a thread http://latitudes.org/forums/index.php?showtopic=16422&page=2

4) It sounds like pen doesn't agree with you. How about Azithromycin?

Edited October 20, 2014 by eamom

[PIK]

Thank you for responding. I do have some questions though, if you can help:

 

1. You say Swedo says twice per day - is it the same 500 mg dose split in half, or is it 2 doses of 500 mg? I doubt I can tolerate more penicillin, but I don't see how splitting the dose in half could hurt.

2. The headache stops eventually (days if not weeks later) when I don't take the penicillin, the joint pains are on and off. Dr. T tested for like EVERYTHING, and I've never had an EM lesion with not much exposure to tics etc. I kind of doubt Lyme and lean more toward the strep since the ASO titers are SUPER elevated, and all the Lyme testing has been negative.

3. I'm 36 now. Rheumatic fever was at 17, glomerularnephritis at 28 with ongoing sudden onset OCD issues since strep exposure at 14. I doubt OCD was a diagnosis then, let alone PANDAS. I remember being taken to a psychologist who would just go on and on about low self-esteem, as if ALL 14 year old kids don't have low self-esteem issues. I have considered tonsillectomy, and still think about it, because I think it would greatly help my sleep apnea too, but the horror stories regarding the pain involved really scare me.

4. I sent an e-mail regarding all this to my rheumatologist again. I will see what he says and perhaps bring up Azithromicin or other alternative to penicillin.

Edited October 20, 2014 by pik

[EAMom]

This report says 250mg twice daily (although it seems odd that body size wouldn't matter?) for prophylaxis. Just bear in mind, most PANDAS kids don't find low dose pen to be very helpful (esp. if strep is present, and we're not just worried about preventing infection). My feeling is that PANDAS kids don't have a "normal" immune system vs strep so the low dose prophylaxis may not work well for them (or they have a current infection lurking that needs higher doses).

 

http://www.who.int/selection_medicines/committees/subcommittee/2/RheumaticFever_review.pdf

 

You may also be interested in this on Penicillin and Amoxicillin failure in strep throat http://www.urmc.rochester.edu/news/story/index.cfm?id=981

Are you East or West Coast? There are some Azith resistant strains of strep in the East, so Azith does tend to be more popular in the West.

[PIK]

I sent a message to my primary care doctor on Tuesday night with symptoms etc, and he called me at work to go in yesterday. He gave me a shot of penicillin 1.2 million units. I hesitate to mention this for fear of jinxing it, but I FEEL BETTER!!! I feel SOOO much better. I don't know if it's all in my head, but I don't think so. I truly feel better. Also, I've noticed that all the sugar cravings and voracious appetite have stopped. Though I had always been slim at like 150 pounds, I've gotten up to 200 and all I could think about was food - like sugar and glazed donuts. Today, I ate like a normal person and wasn't starving. There must be some connection.

[EAMom]

Interesting! Are you going to get an injection every few weeks?

[PIK]

I have a followup appointment in one month. I don't know if he's planning on repeating the injection (which is what I think is done for rheumatic fever) but if I continue feeling better, I will ask him to do so. I just got results from the ASO titer he drew. It is still at 800.

[PIK]

I had the followup appointment with my doctor today. He did not want to re-administer a penicillin shot. I have had a steady decline since getting the shot last month. I felt great and have felt a little worse every day. I don't feel ill now per se, but my joints have started hurting again. And I gained back any weight I had lost. I'm convinced that the whole weight thing must have something to do with my kidney function. He said he didn't want to just give me medicine without knowing what he is treating. He suggested that I see another rheumatologist and have me a referral. So I will call the new rheumatologist tomorrow and try to get an appointment. I'm disappointed to say the least, but I'm not angry with him. I just don't understand what this big fear of antibiotics is! From what I've read, it is suggested that people get at least five years' worth of monthly penicillin injections after rheumatic fever. I simply asked him to give me another one, to see if it would have the same effects as the first, so we can have something to work with. I guess the fear of law suits just blinds doctors' logic. What else can I say?

[pr40]

what law suit? because he gave you a second penicilling shot? I doubt it. it must be something else.

i am sorry you are having such difficulties finding the right dr.

sometimes, it works to be more assertive. at other times, it helps to try to convince them -- like if you come with a prepared argument on what is usually done after rheumatic fever or with research showing that abx have anti-infammatory effect and that you should be taking abx because it will halp your auto-immune issues.

you might have done all these things already, of course.

if pANDAS taught me one thing it is that getting the right treamtent is a fight.

good luck!

[EAMom]

Ughh. Sorry. Was it the rifampin/clindamycin that helped your OCD?

 

I wonder if leaky gut/intestinal permeability might be compounding your symptoms (esp with the weird weight gain). Have you ever tried cutting out gluten (also soy/dairy)? It seems like the intestinal permeability goes hand in hand with other autoimmune diseases and can contribute to inflammation.

 

http://www.weightandwellness.com/resources/articles-and-videos/the-deli-detective/gluten-free-eating/

 

and
http://www.weightandwellness.com/radio-show/search-for-previous-radio-shows/the-rise-in-autoimmune-problems/

Anyway, at least the diet thing is something you can change w/out the doctor's okay.

Also, probiotics can help but be careful b/c some people find probiotics make things worse (esp if there are strep strains, s. therm for example).

Supposedly antibiotics can also affect intestinal permeability.

Note: my PANDAS dd (teenager) isn't gluten free but I would like her to be. I just couldn't get her on board with the idea.

Pen injections would be easier on the gut than other options. But definitely do whatever antibiotics might help.

I wouldn't worry too much about slow to drop ASO titers. But, a rise would be worrisome. Also, your symptoms, joint pain/ear throat problems is what I would gauge things buy. ASO can just drop very slowly in some people (years).

I wonder if an ENT would be helpful?
I still wonder about Lyme...

Edited November 19, 2014 by eamom

[EAMom]

More on leaky gut http://chriskresser.com/9-steps-to-perfect-health-5-heal-your-gut :

"When the intestinal barrier becomes permeable (i.e. “leaky gut syndrome”), large protein molecules escape into the bloodstream. Since these proteins don’t belong outside of the gut, the body mounts an immune response and attacks them. Studies show that these attacks play a role in the development of autoimmune diseases like Hashimoto’s and type 1 diabetes, among others.

In fact, experts in mucosal biology like Alessio Fasano now believe leaky gut is a precondition to developing autoimmunity:

There is growing evidence that increased intestinal permeability plays a pathogenic role in various autoimmune diseases including [celiac disease] and [type 1 diabetes]. Therefore, we hypothesize that besides genetic and environmental factors, loss of intestinal barrier function is necessary to develop autoimmunity."

 

Edited November 19, 2014 by eamom

[PIK]

Following up on this thread - my internal medicine doctor agreed to give me monthly penicillin shots to see what happens. I had a visit with rheumatologist as well, and ASO is down from like 1050 to like 790. Anti-DNASE B is still high at around 380. What worries me though is that sed rate was high at 35. He didn't even mention it and I saw it when reviewing the labs. Does anyone have any info on sed rate? At least as it ties in with strep, rheumatic fever, and PANDAS? When reading about it I came across scary words like "cancer" and "viral illness (which translated to HIV in my mind). Please offer input. I am planning to call my internal medicine doctor on Monday and discuss with him.