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My son has PANDAS, CLASSIC Strep PANDAS. However, over time he started getting triggered by other illnesses and I guess we then should call it PITAND. He had Myco pneumonia a year ago and recently has had an Igenex result of Bart (just over the line at 40) & Lyme (only 2 bands). I am not wholly buying the Lyme (but that is another subject altogether). He is doing well but we have lived a roller coaster for half his life and want to be prepared for anything that may come up in the future. If the current abx protocol starts to fail, our next step will be a steroid burst. I keep reading that this is bad for Lyme + kiddos, but not the reason why. Can someone please enlighten me? I do not want to post this on the Lyme forum because I belong HERE, as my child has PANDAS. He MAY, however have a co-infection of Lyme. Thanks!

Edited by Beeskneesmommy
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bees....I am not a lyme-expert by any means, but we turned down a steroid taper after being strongly discouraged from trying it due to our "negative" igenix test that had some IND's and +'s on "lyme specific bands" by some strongly opinionated parents on this forum. ultimately, I take full responsibility for this choice (to NOT try steroids) but do wonder where we would be now, a year later, had we tried the steroids. we are still not treating lyme at this point. my point is, unless you can find some good evidence for this, other than some people on this forum saying that some lyme doctors say it can cause the lyme to "go into hiding" or "come back stronger"---I would suggest speaking specifically with a doctor equipped to know the answer to this. There MUST be one, if it is being claimed to be the case. our pandas doc told us that a month of steroids would not be enough to cause lyme to become out of control. this doc is NOT a lyme expert, but I believe you see Dr. B, who I think does a shorter course of steroids even. Steroids are used for other reasons DURING acute illness at times....I don't know the answer, but just do some digging, especially if you believe you are JUST pandas....

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I do not necessarily believe that he is JUST PANDAS, but I have strong conviction that he has PANDAS and then may have been infected with further infections (co-infected). There is no way to difinitively say that he is not Lyme infected. He is in almost full recovery right now and doing great. However, I like to think far, far ahead because I have ridden this honeymoon wave before and I want to be fully prepared and have these types of decisions already made PRIOR to any concerns popping up in the future. I most certainly will speak with Dr. B about it when we talk this week. However, I am still trying to figure out why everyone keeps writing about the dire consequences of steroids with Lyme present, but no one seems to be providing any details regarding WHAT the dire consequences are??!! Thank you ---I guess I am feeling a little frustrated tonight! -Kath :)

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I can tell you what I was told. Steroids are not be be used in Lyme patients because, if used long enough, they surpress the immune system and allow Lyme to "flourish." Don't know if this is fact or not. Post in Lyme and see what they say,

 

Kath...PERSONALLY, with your Lyme results you posted, I would throw Lyme and Bart in the trash, never look back, and not lose a single z over it! But now, that is just me...what do I know.

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Please see my post in the post about negative Igenex testing.

 

We did do the steroid burst for 21 days. It didn't really help, but it didn't seem to hurt that much either (although, I am now remembering she got the stomach bug during it...don't don't whether that would have happened regardless given that it was going around the school at the time).

 

After no improvement on the steroids, we did IgeneX. She clearly tested positive for Bartonella. Lyme results were "negative."

 

So again, if your child is not getting better, keep digging and make the best decision you can with the information you have.

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Bees,

My DS did two month-long steroid bursts with great improvement, while he likely had lyme as an underlying infection. Those were when he was in serious exacerbations and he remained on abx so if there was immune suppression, perhaps the abx helped support him despite the prednisone. I don't know. One other time, when he was not in an exacerbation but a second Pandas doc dx'd him visually with a sinus infection, we were instructed to do a third taper and switch abx. After only a few days, I saw a decline in his overall situation. Since he had not been in a bad place prior to this, I discontinued the taper (we were only a few days into it), returned to the abx that had been doing a decent job and he rebounded - not to baseline but to where he'd been before the taper.

 

In general, I believe steroids are not recommended for those with lyme or other chronic infection because the idea of immune suppression would be contra-indicated. However, this line of reasoning probably does not take into consideration that impact inflammation has on our flavor of kids. I personally feel the risks have to be weighed against the benefits. The entire family suffers when a child is in a neuropsych flair. If lyme is a potential issue and the issues can be managed in another way, I'd suggest alternatives. But if you can't get a child to school or he's raging or is in some way non-functional, if your other kids or your marriage are bearing the brunt, steroids may be worth the possible gain you give the bugs.

 

DCMom has found tremendous relief with steroids, NMom had a horrible experience. I think any parent has to weigh the pros and cons in their own situation and just be aware of the risks so they can make an informed decision. Prednisone is one of the last tools I'd use for my son at this point in our journey, but I also haven't tossed the bottle that's in the fridge for an emergency.

 

PMom and I disagree on the relevance of your labs, especially if you're seeing better results on an abx combo, but that is for you to decide.

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I think there is an issue with steroids and any/ many chronic infections. Steroids make it difficult for the body to localize infection.

 

However, a month long steroid taper is not, from my info, considered an immunosuppressive dose. I was told to go ahead with steroids, while on antibiotics, for pandas, even with the possibility that my kids had lyme.

 

I doubt you will find a credible study or paper on lyme/ steroid use, as chronic lyme is not currently a mainstream medicine issue. If you want to research, I might look in general at steroids use with infection.

 

I think, at the time, the decision will be much easier. If your child has another episode, and is in crisis, you will have to look at the risk/ benefit equation. IMHO it does not make sense to let a child suffer with acute neuropsych symptoms, and let their brain be attacked, for fear of a chronic infection (that you have been treating). Either way- I am also a plan ahead person- but I think some of these decisions have to be made in the moment.

 

Lets hope you don't have to face this.

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I agree with dcmom and LLM's posts.* There isn't much to add. However, I found this site to be really informative about prednisone:

 

http://noairtogo.tripod.com/prednisone.htm

 

 

 

 

 

*With the exception of LLM's interpretation of Bee's Lyme Lab results--I don't have an opinion of that because I haven't needed to learn about it.

Edited by Kayanne
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I'll weigh in here since we have a positive Lyme test (very positive I've been told) and just recently finished a 30 day steroid burst. We did have a lot of issues in the early days and (as I've said before) I wish I'd understood all the potential side effects of steroids before starting. My pediatrician was very concerned that we were on steriods given the Lyme test because it is an infection and any suppression of the immune system is contraindicated when the patient has an infection. I researched a few Lyme doctors and found articles from several Lyme researchers and clinicians that said they would either never prescribe steriods to a patient with Lyme or that they would only do it if the patient was on antibiotics to treat the Lyme...we are on antibiotics anyway so that put my mind at ease a little bit.

 

So long story short...we did have a horrible experience with steroids in the first couple of weeks and I would have to seriously consider whether to use them again but I do not think our issues were Lyme related. Around day 15-16 we saw a dramatic response and had three wonderful weeks where the symptoms just seemed to disappear. My son struggles mostly with OCD and some mental tics and it was like we got him back. We finished steroids last Tuesday and almost immediately saw things start coming back. He's had a sore throat now for three days and started running a fever so it may just be our bad luck that he caught something just at the end of the burst. There is a LOT of strep going around school so guess it was going to happen eventually.

 

My advice would be that if you decide to pursue steroids - have a support system to identify any potential issues. Have his blood pressure and glucose checked on a regular basis. Have a local doctor that is on board and willing to treat any potential problems. We do not have a local PANDAS doc here so it was very difficult to show up at my pediatrician's office with our story and know that he was not comfortable at all with the steroid burst. Hopefully you won't need any help but it's better to be prepared than in crisis mode like we were - we ended up in the ER.

 

As a side note....I also went to the Texas A&M Symposium last week and talked to one of the Lyme doctors that presented there. I 'just happened' to have my Igenex test results so I asked him to interpret them for me. He said it was a clearly positive test but that he would consider it already treated at this point since we are on a treatment level dose of antibiotics. He felt (based on our history) that strep is our major trigger. Now he did not examine my son and we will probably still see another Lyme doctor simple because antibiotics do not seem to be the end answer for us so I need to keep digging. But I still found comfort that at least one of the leading Lyme doctors that also understands PANDAS felt like the antibiotics are appropriate for Lyme. And on a positive note...my pediatrician attended the symposium too! At the end he said he wondered how many kids he might have missed..yeah!!!! It's a start.

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I feel like I've read on here repeatedly that the month steroid taper is meant to suppress the immune system (shut it down, thus stopping autoimmune response too), but ALSO has anti-inflammatory benefits as well....???

 

 

I think there is an issue with steroids and any/ many chronic infections. Steroids make it difficult for the body to localize infection.

 

However, a month long steroid taper is not, from my info, considered an immunosuppressive dose. I was told to go ahead with steroids, while on antibiotics, for pandas, even with the possibility that my kids had lyme.

 

I doubt you will find a credible study or paper on lyme/ steroid use, as chronic lyme is not currently a mainstream medicine issue. If you want to research, I might look in general at steroids use with infection.

 

I think, at the time, the decision will be much easier. If your child has another episode, and is in crisis, you will have to look at the risk/ benefit equation. IMHO it does not make sense to let a child suffer with acute neuropsych symptoms, and let their brain be attacked, for fear of a chronic infection (that you have been treating). Either way- I am also a plan ahead person- but I think some of these decisions have to be made in the moment.

 

Lets hope you don't have to face this.

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Yes, that's right. Here is a quote from that link I posted:

 

Mechanism of Action: Glucocorticoids are naturally occurring hormones that prevent or suppress inflammation and immune responses when administered at pharmacological doses. At a molecular level, unbound glucocorticoids readily cross cell membranes and bind with high affinity to specific cytoplasmic receptors. This binding induces a response by modifying transcription and, ultimately protein synthesis to achieve the steroid's intended action. Such actions may include: inhibition of leukocyte infiltration at the site of inflammation, interference in the function of mediators of inflammatory response, and suppression of humoral immune responses. Some of the net effects include reduction in edema or scar tissue, as well as a general suppression in immune response. The degree of clinical effect is normally related to the dose administered. The antiinflammatory actions of corticosteroids are thought to involve phospholipase A2 inhibitory proteins, collectively called lipocortins. Lipocortins, in turn, control the biosynthesis of potent mediators of inflammation such as prostaglandins and leukotrienes by inhibiting the release of the precursor molecule arachidonic acid. Likewise, the numerous adverse effectsrelated to corticosteroid use are usually related to the dose administered and the duration of therapy.

 

Motrin is an anti-inflammatory. It is an NSAID which stands for Nonsteroidal anti-inflammatory drugs.

 

I feel like I've read on here repeatedly that the month steroid taper is meant to suppress the immune system (shut it down, thus stopping autoimmune response too), but ALSO has anti-inflammatory benefits as well....???

 

 

I think there is an issue with steroids and any/ many chronic infections. Steroids make it difficult for the body to localize infection.

 

However, a month long steroid taper is not, from my info, considered an immunosuppressive dose. I was told to go ahead with steroids, while on antibiotics, for pandas, even with the possibility that my kids had lyme.

 

I doubt you will find a credible study or paper on lyme/ steroid use, as chronic lyme is not currently a mainstream medicine issue. If you want to research, I might look in general at steroids use with infection.

 

I think, at the time, the decision will be much easier. If your child has another episode, and is in crisis, you will have to look at the risk/ benefit equation. IMHO it does not make sense to let a child suffer with acute neuropsych symptoms, and let their brain be attacked, for fear of a chronic infection (that you have been treating). Either way- I am also a plan ahead person- but I think some of these decisions have to be made in the moment.

 

Lets hope you don't have to face this.

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