Recommended antibiotics

[Mikeb123]

I recently posted earlier about myself, but I had some more questions that hopefully someone could help me with. I am a 21 year old college student who has been sick with some kind of infection (probably strep) for over 3 months now. Along with this infection has come horrible increases in my ocd and anxiety. I recently was told that my antidnbase numbers (strep bloodwork) were higher than normal (I believe 100 is normal for adults, I was at 188). I was never actually diagnosed with strep during these past 3 months of feeling physically sick. When I was at the peak of my strep symptoms the doctors messed up and didn't send the culture in, so that makes things more difficult.

 

Anyways my question for you all is what is a good antibiotic you have seen to get rid of a lingering infection related to pandas. I've been having a bunch of symptoms (ears, nose clogged, tickling throat, stomachache, nausea, headaches, hot flashes, etc) and so far I have only taken a z pack, which didn't work, and ceftin, which got rid of a horrible cough I had for a month but that's really it. Also I can't take penicillin because I was told by mom that I'm allergic.

 

Any recommendations would be greatly appreciated.

[MomWithOCDSon]

My DS took Augmentin XR to great success. He, too, had a lot of lingering upper respiratory issues and we suspect he had some strep in his sinuses, etc., though we never went to the extent of having them scoped as 1) he responded well to XR and 2) at the time, we didn't have trouble convincing his doctor to continue to prescribe it for him. You may have heard of Sammy Maloney of the book "Saving Sammy;" he, too, took XR successfully.

 

In the end, though, my DS was on XR for nearly two years before he could successfully wean off without snapping back like a rubber band. Maybe because the strep had truly "colonized" throughout his sinus cavities or elsewhere? Hard to know, but the XR was effectively while he took it and helped him turn the corner healthwise overall.

 

If you think strep in your sinuses might be part of the picture, you might also try supplementing with n-acetylcysteine (NAC). It's an amino acid that's been studied for a whole host of properties, including its ability to bust biofilms in which some bacteria (like strep) can hide, helping prevent and reduce duration of some viruses (the flu, in particular), and even reducing OCD in kids and adults (a study done by the NIMH and Yale on both populations).

 

Good luck to you!

[Mikeb123]

Thank you so much for your suggestions! I'll definitely try to get the augmentin you're talking about as well as the amino acid.

 

Also I had 2 follow up questions. How long was your DS sick for before getting on the augmentin and how long did it take before you noticed the improvements from the medication?

 

Thanks again!

[MomWithOCDSon]

Mike --

I think, not dissimilar from you, my DS was diagnosed with "regular OCD" when he was 6. He'd had one ear infection after another in his toddler years, followed by allergies and lots of upper respiratory issues during grade school. But even though we knew he'd been exposed to strep (form letters sent home from his school, and his dad or I would come down with a class case of strep throat within a week or so of that notification), he NEVER "caught" strep in the classic sense. After the OCD diagnosis, I did some research and found out about PANDAS, but I couldn't get any of our doctors to take it seriously, especially once every culture I managed to talk them into came back negative!

 

So we got him into therapy first, and then when the OCD revved up substantially at about age 7-1/2 (following another "strep letter"), and I still couldn't get anyone to acknowledge PANDAS in him as perhaps a strep carrier, even though he never seemed to suffer from the bacteria physically himself, we submitted to a low-dose SSRI (Lexapro). Things went along relatively smoothly for the next few years, with just some minor bump of increased anxiety or OCD.

 

But then when he hit age 12 (again, within weeks of our having received a "strep letter" from the school), he totally lost it, and the decline this time was rapid and unstoppable. Within a couple of months, he was nothing but a puddle on the floor of his bedroom; he couldn't sleep, couldn't eat, couldn't shower, couldn't go to school, couldn't do school work, couldn't play, couldn't watch TV, because EVERYTHING made him anxious! An absolute non-functional basket case. And yet, there was no sign of any physical illness, beyond the allergies and general congestion he'd always battled. The doctors still scoffed at PANDAS, so instead they started messing around with his meds: changing them, increasing them, adding to them. Nothing helped, and he just kept unraveling.

 

After about 6 months of this decline, we finally sent him to a partial out-patient program (he'd go all day and then come home at night) at a local hospital where they were supposed to provide him with intensive therapy and medication management. While he was there one day, my DH and I were browsing in a bookstore and I came across "Saving Sammy." I read it in just a few hours and emailed the author, Beth Maloney, about how many things her son, Sammy, and my DS seemed to have in common. She wrote back, encouraging me to order the blood (titer) tests since, like Sammy, he was classically asymptomatic for the strep, it seemed. I called the attending psychiatrist at the out-patient program and told her I wanted the blood tests. She balked but finally ordered them. When they came back the next day with highly elevated strep titers, I asked her to order abx for treatment. But she wouldn't.

 

So, I went to the bookstore and bought two more copies of "Saving Sammy" and took one to DS's psychiatrist and the other to his pediatrician; the pediatrician's office squeezed me in to see her for a few minutes, and I gave her a synopsis of Sammy's story and how Augmentin XR helped him so dramatically, and I reminded her how "normal" my DS had been when he was younger, and how this new mess of a boy wasn't who he was . . . that there was something afoot here, and he needed her help. She acquiesced and ordered the Augmentin XR from our local pharmacy, and I picked it up that night.

 

Mike, within 48 hours, he was a different kid. Now, mind you, he was not nearly as functional as you appear to be. He couldn't have posted a note on a forum or probably typed a single sentence at the time, so ANYTHING was a step in the right direction. But by the next night (after two doses of the XR), he was able to come out of his room and come eat dinner at the dinner table with us for the first time in 3 months. It was nothing short of miraculous. The improvements kept coming, though they became more subtle over time. But by keeping a journal, we were able to better track the things he'd not been able to do for months but was now going back to, as well as the unwanted behaviors/thoughts that he was starting to let go of for the first time in many months.

 

So, long way of saying, given the ear infections and all the upper respiratory stuff he suffered from about age 2.5, and he didn't get abx (other than a 10-day dose her or there for an ear infection, etc.) until he was 12, that was close to 10 years of likely suffering PANDAS without getting treatment for anything other than the psychiatric symptoms. He felt noticeably better within 48 hours, and he got slowly better over the next 2 years. For a while during that period, we would think the abx had completed their positive impact and we would take him off, only to see the old unwanted behaviors creep back in until we put him back on. After about 22 months on full abx, we started weaning him off slowly, just stepping the dose down gradually over several months until it was gone completely. That time, he was able to "hold."

 

He still gets anxious from time to time and maintains some OCD "habits" (mostly related to contamination), and we've continued a low-dose SSRI (now Zoloft) and some supplements (including NAC) that seem to help him, but he is fully functional and able to operate in the world as most 18-year-olds can. He's a freshman in college this year and thus far -- knock on wood -- doing very well and loving it. So, in our experience, having contended with OCD for several years prior to getting PANDAS treatment, we think he's likely to always have some OCD tendencies. But where he is today is a long way from where he was at age 12, and since age 14, he's done nothing but improve in terms of functionality, happiness, age-appropriateness and ability to manage his own "anxious moments." So it's a win in our book!

 

All the best to you! You might do some research but, unfortunately, I think Augmentin might be a penicillin derivative? So, if you truly are allergic to penicillin, it might not be the right answer for you. Still, there are many different abx interventions that people on this forum have found success with. I think the thing about azithromycin (isn't that what's in a z-pac?) is that it has a very short half-life, so it doesn't necessarily stay active in your system all that long. That might be one advantage extended-relief abx like Augmentin XR has in its favor. But it might also be that the azith would be effective for you if you took it for a longer period of time. Hopefully some others will find a chance to post here shortly about their own abx experiences.

[LNN]

You might want to get tested for mycoplasma pneumonia - which can also be a Pandas/Pans trigger. That seems to match many of the symptoms you describe. Azithromycin is a good abx for mycoplasma but needs to be taken for a month or more.

 

(BTW - Nancy - azithromycin actually has a very long half-life - 36 hrs. Which is why you can take 5 days of zith and be covered fro 10 days. Regular augmentin and most other abx have half-lives of 4 hrs or less and augmentin XR is good for 12 hrs.)

 

I agree with Nancy that NAC is a great mucus thinner and is good for some people with OCD. But be on the look out for depression if you take it for any length of time. I took it for several months and became very depressed (not typical for me) and my liver enzymes tested alarmingly high. I stopped the NAC and the depression lifted and the liver panel came back normal. So if you take it, just watch for signs of mood changes and possibly have your liver enzymes tested (ALT/AST blood test) if you stay on it for any length of time.

Edited January 13, 2016 by llm

[MomWithOCDSon]

Thanks LLM. And Mike, sorry about the misinformation regarding Azith's half-life; it's been a while since we've been on the abx train, and I have clearly confused azith for something else.

 

LLM, I continue to wonder about the whole NAC thing . . . I know you've mentioned adverse reactions before, and as I recall, you're not the only one. But for us, it's been nothing but good, and DS's blood tests (including liver enzyme levels) always come back normal, despite having been taking NAC for more than 4 years now. Do you think it's part of the methylation puzzle, or do you know any other sort of "comorbidity" (not sure that's the correct word) in terms of supplements or something that might, consumed along with NAC, contribute to adverse or positive reactions?

 

I seem to recall someone mentioning something about excess ammonia or something in the system with NAC, and so making sure to pair it with sufficient levels of Vitamin C to help "wash the ammonia out" or something like that? Does that make any sense to you?

 

Sorry for hijacking, Mike!

[LNN]

Yes, Nancy - it's due to methylation issues. NAC is high sulfur and works its magic on the transsulfuration pathway - the part of the methylation cycle that serves as the body's detox/garbage take-out highway. The gene that regulates entrance into this pathway is cystathionine beta-synthase (CBS). When you have CBS mutations, you don't break down sulfurs well and you also tend to run high in ammonia levels (ammonia is neuro-toxic). Having this defect also puts a strain on your detox pathway, which makes your liver work harder.

 

 

When you have a CBS mutation (that's turned on, or expressing), and you consume high sulfur foods (sauerkraut, fermented foods, tumeric, NAC, alpha lipoic acid, glutathione related supplements, MSM, the antibiotic Bactrim) it adds to your sulfur and ammonia burdens. I think the higher ammonia may have been part of my unusual depression, but that's speculation on my part. If you have a CBS mutation and do need to use something high in sulfur, Yucca Root or l-arginine can be used to help break down ammonia and molybdenum can be used to compensate for some of the BH4 depletion caused by the sulfur.

 

 

So people who have normal CBS genes won't have this issue and NAC probably has other mechanisms of action that help with OCD. Unfortunately, 3/4 of my family have CBS issues, so it's not an option for us. I only chime in on threads like this just to let people know the response is very individual, so that they know to be aware of potential down sides. But I don't mean to discourage people from trying it.

Edited January 14, 2016 by llm

[Mikeb123]

I have been having a lot of ice cold and burning hot sensations all over my skin the past couple of days, does this sound like lyme or another kind of infection that can come as a result of untreated strep? Thanks to anyone with any ideas.

[LNN]

Mike,

The skin sensations are something my daughter has been experiencing for the past few months. In her case, her skin feels itchy or painful like there's fiberglass insulation on it. She only feels relief when bathing. On occasion, she's also had intense sound sensitivity for a few hours at a time, where whispers have sounded like someone was shouting. Sometimes, she swears we've run out of hot water - the water feels cold to her even though it's quite hot and steam is gathering on the bathroom mirror. It seems that her chronic sinus infection has triggered a PANS reaction and is effecting her parietal lobe - the part of the brain responsible for sensory translation. It's causing her to have abnormally heightened response to sensory inputs. This isn't a common complaint among pandas kids, but I do know of a handful of kids who've had this issue. I've also read that it can be a symptom of Lyme - though it's not specific to Lyme.

 

If you do suspect Lyme, please read through the pinned thread of discussions at the top of the Pandas/Lyme forum. You'll find some helpful links to testing and explanations of test results and shortcomings. If you do get tested, know that most tests are unreliable and do not look for two antibody responses that are unique to Lyme. Back in 2000, they tried a Lyme vaccine and people who had the vaccine would test positive for Bands 31 and 34 (?). So the CDC advised labs to not test for these bands or they might cause a high number of false positives. But the vaccine was a failure and was pulled off the market after 18 months. But the labs never resumed testing for these tell-tale bands. Only Igenex and Stony Brook test for these now. So if you're going to get tested, I strongly suggest you use one of these labs.

 

It sounds like you need to have some tests done by a doctor who's willing to investigate chronic infections. Integrative doctors and osteopaths seems to be more inclined to do this for their patients. Pandasnetwork.org has a list of doctors by state who may be able to help.

[wisdom_seeker]

llm, I don't want to hijack, but I was struck by your reference to high ammonia.

 

Given what you know about the transsulfuration pathsways, could you please respond to the thread I started earlier today about my son's high ammonia levels? Thanks

 

[WorriedDADNMOM]

I would say shingles/herpes reactivation can cause skin issues/pain without many eruptions. I agree about the Mycoplasma P and Strep. But others to look at would be a Herpes panel.

 

I would say the Zithromax for 5 days is probably not enough time to start debulking any chronic infection. Since it is broad spectrum....a probiotic would be warranted in addition......... opposite times of the day.

 

Let us know if you need anything else.

[Mikeb123]

Just a quick update for everyone. I retook ceftin starting the 15th and have been extremely up and down mood wise. Some days are pretty promising while other days are horribly bad. This medicine perscription goes on until the 30th and I'm determined to finish it. I recently remembered about how when I was super young and had horrible pandas problems at around 4 years old (rages and all that good stuff) I used to take Motrin to help with the problems.

 

Sadly since my mom passed away in 2013 I can't ask her directly the benefits of this (all I know is that ceftin is the medicine that is constantly brought up by her for me when it comes to strep infections/pandas in all my childhood records) but do you think if I added Advil to the ceftin that could help push the bad days away or at least make them less severe? Has anyone ever heard of an antibiotic/over the counter combo doing the trick?

 

I'm obviously pretty desperate at this point and just want to see some progress since I've been dealing with increasingly worse anxiety since this started in October.

 

Thanks!

[WorriedDADNMOM]

Mike, some things to research that are pretty easy to treat OTC if your not under a docs care:

 

Zinc deficiency as it relates to pyrrole disorder.

 

http://www.integrativepediatricsofohio.com/topics/biochemical-diagnoses/

 

https://www.truevitality.com.au/articles/pyrrole-disorder/

 

http://healthy-family.org/why-am-i-so-edgy-learn-about-pyrrole-disorder-pyroluria/

 

Vitamin D deficiency.

 

http://articles.mercola.com/sites/articles/archive/2014/05/28/vitamin-d-deficiency-signs-symptoms.aspx

 

http://www.medicinenet.com/vitamin_d_deficiency/article.htm

 

http://www.wsj.com/articles/elite-athletes-try-a-new-training-tactic-more-vitamin-d-1453745154

 

 

Let me know if you need anything else.

[Mikeb123]

So a quick update; turns out I have mono. The EBV IGG numbers are supposed to be below .9 and I'm currently at 4.1. So it's pretty high up there. Now it's been confirmed that I have strep and mono. I just got bloodwork today to check for mycoplasma, really hoping I don't have that. 2 things is already a lot to deal with.

 

The weird thing for me is how it really feels like my brain is dealing with a lot more problems from this sickness than my body is. I have definitely felt tired these past few months but I never even thought I had mono until the doctor brought it up to me and eventually got me checked for it.

 

Anyways my question now is I recently read online that the best way to treat mono is with vitamins, amino acids, and rest. I recently started taking an emergen-C pack and although this was only a couple of hours ago I have felt an increase in anxiety and OCD, not improvements, since finishing my packet (it's a fair amount of vitamin C). I'm really getting frustrated because I've been dealing with steady increases in anxiety and OCD now for the past 4 months and it seems like every time I try something to help the problem become less severe it either does nothing or makes things worse.

 

Is it possible that maybe my immune system is just in shock from such a high dosage of vitamin c and that I should stick with it for eventual improvements (hopefully) or should I maybe just stop the vitamin c route all together?

 

Thanks

 

Mike B