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What to expect from steroid burst


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My son is 11 and our whole situation started 2 years ago with strep and seemed to be constantly triggered by other things too. So I guess he would be in the PANS catagory. Anyway, things have not improved so we tetsed for lyme. He came back positive. We are currently doing Biaxin and have an appt with LLMD in January. But the dr he sees now wanted to try a steroid burst this week. I have read you should not do steroids with lyme. I just want to know what to look for. He is only on the third day and has complained about being nauseous and dizzy and has been having bad headaches. What should I be seeing?

 

Thanks

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Hopenny

 

He has been on the Biaxin since the beginning of November and we did a month of Zith before that. He had also been on Zith since January and went off it during the summer.

 

I am currently reading the "Cure Unknown" by Pamela Weintraub, but there is a lot of info in it and is very overwhelming. I should have taken notes as I was going along. It's about 400 pages.

I also got another book called "Beating Lyme" by Constance Bean, but have not started that one yet.

 

 

Thanks for any advice.

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My son did three steroid tapers (3 weeks each time) in the two+ years we thought he only had Pandas but also had undiagnosed lyme. In two of the tapers, he saw great relief of his symptoms. Unfortunately, the relief was temporary and things declined within a few weeks of finishing the taper. In the third taper, he actually got worse and I stopped the taper after only a few days.

 

When he was finally diagnosed with lyme, I asked my LLMD why my son got better with prednisone if it was bad for lyme. He speculated that sometimes the pain and symptoms you get from inflammation is so great, that when you take a powerful anti-inflammatory like prednisone, you feel this sigh of relief. Over the course of a few days or weeks, the immune system probably wasn't suppressed enough to make a difference in the lyme war one way or the other yet the relief was so very welcomed. He went on to say that if we had done prednisone more often or for longer periods of time, then it may have done harm and allowed the lyme to get a leg up. And he wasn't about to give us more of it the next time inflammation was a factor (e.g. during a herx). But in his opinion, while he didn't like it as a drug, he didn't feel we'd done some major harm in the times we'd used it.

 

That said, if you have confirmed lyme, I'm not sure why your doctor would be telling you to use it. It's not going to give you lasting relief as ling as you have an active infection. I personally wouldn't but I think it depends on how bad things are for your son right now. My son saw great relief within a day of starting prednisone his first two times but I stopped it on our third time when it instead made him hyper, edgy, and generally not feeling well. It's supposed to bring relief. If it isn't doing that, why bother?

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I think the dr we are seeing, who understands pandas, is trying to confirm everything with the steroids. Like it has been said that if they respond to a sertoid burst it is pandas. Now I know not every doctor has agreed with that. Again , it is the constant battle over what each doctor believes. Unfortunately, he told me he does not know a lot about lyme, that is why I have the other appt scheduled.

 

This is just a constant frustrating journey. I wish the doctors could uderstand this and most importantly, listen to us parents.

 

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A friend diagnosed with Lyme and treated for over 3 years is on a daily low dose of steroids for adrenal fatigue and it has really helped her get a leg up on recovery.

 

I was given steroids for 2 weeks while pregnant with twins when I unknowingly had Lyme. The steroids triggered daily seizures and my blood pressure sky rocketed. The twins were delivered early as a result of my condition. After the twins were born, it took several weeks for these symptoms to resolve.

 

Our older son who is diagnosed with gestational Lyme had good result from 5 day steroid burst but like others his symptoms returned within a few weeks.

 

I think it can be a very mixed bag with steroids and chronic infections. However, I would closely document any symptoms that crop up during taper to report to your future LLMD like nauseous, dizziness and headaches. Also ask your son what type of headache it is and where it is located. For example, is the headache at the base of his head, near his eyes, near his forehead, is it spiking pain or generalized pain. The particular type of headache might help your Dr. determine if he has a co-infection and what type. The symptoms you mention are indicative of Babesia, a common headache with babesia is a headache at the base of the head in the back.

Edited by sf_mom
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I can't address the Lyme issue, as that was one thing my daughter didn't have.

 

She was on what seemed to be a massive steroid burst during her second episode (for about 6 weeks). She also was on Clindaymycin. There was a dramatic improvement in a little over 48 hours.

Her neuro told us we should watch out for "roid rage". Fortunately, that never happened.

 

She did seem to get fairly hyper though.. almost like she was on speed.. At one point she began cleaning everything in the house with Clorox wipes, and actually alphabetized all of our bookcases. This was highly unusual for her. The Dr. said the cleaning was probably because she was terrified of getting sick again. (In our case, it was always strep.)

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DD had the same symptom which resolved fairly quickly with biaxin/rifampin for bartonella. Before treatment the pain was pretty continuous but worse in the morning. The fact that this can be a symptom of meningitis/encephalitis keep coming to mind.

Edited by rowingmom
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Most people I know that suffer from this type of headaches and have babesia often get them daily. For me it was typically later in the day starting at around 2:00 p.m. My headaches were followed by moodiness and fatigue. The headache made it difficult for me to hold my head up. Thankfully most of these symptoms have subsided.... I no longer have the fatigue but do occasionally get the specific headache. I am considered to still have Babesia due to continued deep thigh bone pain, dull pain on top of my head and the infrequent headache at base of skull.

 

Spiking headaches are more Bartonella. Dull pain behind eyes is Babesia and spiking pain behind the eyes is Bartonella.

 

I should add that even those these symptoms can indicate a specific Tick Borne Infection... I do believe other infections, viruses or parasites can also cause similar symptoms.

Edited by sf_mom
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My son is 11 and our whole situation started 2 years ago with strep and seemed to be constantly triggered by other things too. So I guess he would be in the PANS catagory. Anyway, things have not improved so we tetsed for lyme. He came back positive. We are currently doing Biaxin and have an appt with LLMD in January. But the dr he sees now wanted to try a steroid burst this week. I have read you should not do steroids with lyme. I just want to know what to look for. He is only on the third day and has complained about being nauseous and dizzy and has been having bad headaches. What should I be seeing?

 

Thanks

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We gave our DS Prednisone earlier this year - before we had a positive diagnosis for Lyme. Honestly we were kinda throwing all kinds stuff at it to see what would stick. WIthin 48 hours, DS's symptoms were off the scale - we stopped the drug immediately - and it took us 3 weeks to get the spike to subside. In hindsight we now know that it was Lyme and supressing the immune system was not a wise decision.

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Things got worse by the third day, so I stopped giving it to him. He was so pale, under his eyes got dark and red, and he just felt horrible. Now two days later, he feels a little bit better and looks so much better. But his biggest complaint is a terrible headache. We just started another course of Biaxin last week and I am wondering if it is now starting to work. They say it could take a couple of weeks to start fighting the bacteria and I am wondering if the steroid lowered his immunity. Always trying to fit the pieces together.

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Hi - I just recently started my child on a steroid burst. It is not a taper. I was wondering if you could tell me how much you used and how big your child is as a comparison. I do not know if my son has lyme and this is a concern to me. He is not on any other medication at the moment. Has been on several abx in the past that did not help much - Zith, Aug, Biaxin, Doxy. Thanks!

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