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After taking Septa for 2 weeks DS had some diarrhea - and we took him off it bcs it was to bad. He also had some headaches and fatigue during that time (the second week of it, not the first) , but he was at camp the second week thats when diarrhea and headaches started - and I freaked and told the camp administratorsto stop giving him the the Septra - After camp - his mood improved, and his stretch mark rash faded during that 2 weeks - a lot. So we are thinking Bartonella, even though he tests negative. He's had pandas DX possible Lyme - confirmed mycoP which has been treated for 6 mos.

 

He was on Septra for 2 weeks, off for 1 week. I called LLMD and they said to start him back up, but double the probiotics for the diarrhea. So today I started him back up. Within 2 hours his temperature went to 101 + and he had a bad headache (this is with Advil). I'm thinking (hoping actually!) this is herx.

 

He only had ONE dose. And he knows this is why he is feeling bad and is upstairs swearing that he will never take this medicine again as I write this.

 

Any thoughts or advice welcome! I'm actually happy - it looks and feels like a real herx, but getting him to take that pill tomorrow after this reaction to it tonight will not be easy.

 

Any others have experience with BART herx like this???

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Norcalmom,

 

That does sound like herxing to me. My Bartonella herxing included terrible headaches on top of my head, night sweats, difficulty sleeping, and increased foot pain. What helped my herxing was:

 

1. Dry sauna 3x per week

2. 30-minute Epsom salts baths 3x per week

3. Drinking LOTS of water throughout the day (w-lemon)

4. Ibuprofen 3x per day

5. Milk Thistle

6. Alpha Lipoic Acid

7. LOTS of sleep

 

Others may have other suggestions that work for them.

 

Nancy

 

P.S. Almost forgot to mention diet, which can REALLY help to minimize inflammation. I have found that eliminating gluten (and in fact most carbs), dairy, and sugar have helped TREMENDOUSLY. I eat mostly organic raw vegetables (rainbow of colors), fruits high in anti-oxidants, raw nuts and seeds, salmon, eggs, etc. (meat only once a week).

Edited by NancyD
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Thanks Nancy D for all the suggestions. It was a really bad night, I slept on his floor. He stayed at over 101.5 temp despite Advil every 4 hours. He felt nauseous and more like a migraine than a headache - the Advil didn't touch that either. Fever broke today at around noon. he only had ONE pill - dose is two per day! He obviously can't function on that.

 

Because of the high fever, and the warning I found this morning when looking up Septra that fever is not a mild side effect, but a "stop this med immediately" side effect for Septra, I'm going to have to stop it. I'm hopeful of course is was a major herx and killed off alot of the buggers! Seems like if it was it spurred his immune system into action with that high fever. Perhaps A-bart or azith-rifampin will be better for him, and the septra gave him a jump start.

 

Unfortunately its Sat and LLMD not open weekend.

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Two things to put on your list for the LLMD - some people have an inability to handle sulfer drugs - it has something to do with a reduced ability to handle oxidative stress and clear toxins. I came across it in all my methylation research (maybe the transsulferation pathway?). But I didn't store it in my long term memory because both my kids can take septra without any issues. I remember when we started them, my LLMD saying "well, at least we know they can handle sulfer" but because my brain gets full on a regular basis, I let it go and made room for other stuff.

 

The second thing I'd ask your LLMD about is ruling out heavy metals, especially mercury. Something about thiol groups and mercury binding to sulfers. But not sure you'd see a fever from this. Just toss it out as something I came across.

 

I do hope it resolves. Sleeping on the floor is no way to keep up your own stamina. Hope tonight is better!

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I'm kinda confused about herxing. Headache, diarrhea and nausea are all common side effects from septra. Fever can also happen as well. Why would this be considered herxing? My dd18 took it for a unrelenting questionable bacterial throat infection and had all of these sxs, would that mean that she possibly has Lyme and was actually herxing?

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The stretch marks fading dramatically is exactly what made us realize that we were actually dealing with stretch marks, too...even though DS tested negative. Keep in mind that bartonella hides very easily in the body, and also hides other lyme and co-infections. So, until you start breaking through those cysts, and the little buggers come out, it's really hard to get a true positive blood test.

 

And, yes, it could be a herx, or your son could have been having a side effect. I think you did the right thing to pull him off. There are other drugs that can be used. A lot of people are allergic to sulfa (including me.)

 

Good luck. Sounds like you've finally stumbled onto some answers.

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He had mild headache all day yesterday, and even this morning. Sort of interestingly - he wet his bed last night, and has had a couple very minor head tics. He had this after IVIG too. Hasn't done that in months. It was always the first thing that would happen with an exacerbation, and he did it for 2 weeks or so following both of his IVIGs (ahtough all other pandas symptoms improved dramatically )

 

weird. Thanks for all the advice. My sister is unable to take Septra. Weird thing is DS took it for 2 week (first week was fine, second week a couple mild headaches and diarrhea) had about a week off due to diarrhea - then we gave him ONE does and BOOM - massive reaction within hours.

 

We did some mercury testing years ago - he was neg. This was prior to pandas DX. Will ask LLMD about methylation - I've not started to research that. I see all the posts on it, and haven't had the energy to begin to try to understand it. Do think we need to look at it. I need "methylation for dummies" book or website if anyone has a recommendation!

 

I was going to do IVIG last week - and insurance denied pre-certifiaction. I'm actually kinda happy that happened because it gave me longer to see how he reacted to the septa, and that fact that his mood is better and "streaks" seem to have faded. So, enough evidence that antibiotic to target bartonella may be a game changer for DX. Wish us luck...

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My own experience with Septra/Bactrim has been this:

 

I was put on it twice last year for a period of 14 days-this was before I knew about the lyme & co. Both times I was on it I felt absolutely horrible. Both times I stopped taking it early because it made me feel worse than I did when I was not on it. After learning about my lyme, I assumed I must have been herxing.

 

In December of last year I developed an abx resistant infection after surgery. Culture of bacteria came back showing that Bactrim was the drug of choice. So I reluctently took it again figuring it would also target the lyme/bart. A couple of hours after I took it I noticed my lips felt kinda weird. Made a mental note of it and went on with my day. Took the second dose at dinner time without any hesitation. The next morning I woke up and my lips were larger than Angelina Jolie's!! I was having an Anaphylactic reaction and consider myself very lucky that I even woke up that next morning.

 

It wasn't until the third time-months later-that I had the ANA reaction. So IMO-if your Mom instinct is telling you it may not be a herx but an allergic reaction-go with it and find a different med.

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Both older DS and I have a severe allergic reaction to sulphur antibiotics. I was hospitalized for 3 days back in college due to allergy. Older DS added Bactrim to combo of antibiotics several months ago and within hours of starting he was 'perfect'.... no symptoms of Lyme/PANS for several days. About day 7 he felt sick, day 9 he started with a rash... day 10 rash was so bad we had to stop Bactrim. I was actually disappointed we needed to stop because I felt like it was the very antibiotic he needed due to immediate resolution of remaining symptom at the time. Our LLMD was considering desensitizing his body to the sulphur antibiotics so they could be used. I was paralyzed by the concept and we switched antibiotics as a result.

 

I started researching why someone might have such a severe sulphur reaction and what I discovered it is most likely due to "oxidative stress". Since then I've focused on treating "oxidative stress" with high doses of MSM a natural sulphur which can be used if you have an allergy to antibiotics. I am currently taking 4,000 m.g., older DS takes 2,000 m.g. and twins take 500 m.g. Although, there has been an intense herx to MSM it has made "marked" improvement for everyone in our family. The improvement were so great with MSM, I started my younger twins who are not allergic to sulphur and they too had a huge jump up in their baseline. I am looking forward to seeing YL next week to show her how improved twin's rashes are since starting MSM. I am not sure if its due to improved oxidation or the benefits of having accidentally treated nematodes or both. Nematodes are thought to be a huge part of Lyme by some and even discussed in the movie 'Under Our Skin'. Regardless when something works, I stick with it and this is something that has definitely helped tremendously. About 48 hours after starting MSM I had my first 'Bartonella' like rash across my flank and only stayed for about 2 days. Older DS also had his first 'Bartonella' like rash exactly 30 days after starting MSM (also added Rifampin to combo'd antibiotics a week after starting MSM). The rash was also on his back and was only around for about 3 days too.

 

Here is some information on MSM. http://www.msm-info.com/

 

If you should consider taking MSM make sure there are no additives. We use the Jarrows Powder sold at Whole Foods.

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He had mild headache all day yesterday, and even this morning. Sort of interestingly - he wet his bed last night, and has had a couple very minor head tics. He had this after IVIG too. Hasn't done that in months. It was always the first thing that would happen with an exacerbation, and he did it for 2 weeks or so following both of his IVIGs (ahtough all other pandas symptoms improved dramatically )

 

weird. Thanks for all the advice. My sister is unable to take Septra. Weird thing is DS took it for 2 week (first week was fine, second week a couple mild headaches and diarrhea) had about a week off due to diarrhea - then we gave him ONE does and BOOM - massive reaction within hours.

 

We did some mercury testing years ago - he was neg. This was prior to pandas DX. Will ask LLMD about methylation - I've not started to research that. I see all the posts on it, and haven't had the energy to begin to try to understand it. Do think we need to look at it. I need "methylation for dummies" book or website if anyone has a recommendation!

 

I was going to do IVIG last week - and insurance denied pre-certifiaction. I'm actually kinda happy that happened because it gave me longer to see how he reacted to the septa, and that fact that his mood is better and "streaks" seem to have faded. So, enough evidence that antibiotic to target bartonella may be a game changer for DX. Wish us luck...

 

Norcal mom,

My son's Bartonella was cleared up after one full year of Azithromycin / Rifampin. I noticed in another post that your sons's rash seemed to be "contained" while on Azithromycin only. You might consider the Rifampin / Azithromycin combination (in light of the difficulties that your son is having with the Septra). Azithromycin alone will keep the Bartonella from getting worse but it cannot effectively clear it. (Also, I wrote this elsewhere but it might be worth repeating: a good friend of mine saw her son's Bartonella rash cleared up after only 4 weeks of treatment. There can be a lot of variability with this. The standard approach is to treat until the rash is fully cleared up and then go for 2 - 4 months longer.) Hope this is helpful to you and that things are progressing in a good way.

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