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I recently have posted that I think my children have LYME or Bartonella in addition to PANDAS. Anyway my youngest is starting to have some troubling symptoms without a known trigger, usually I can tell the trigger. Well the PANDAS doc started him on steroids a few days ago but I see on this forum steroids are bad for lyme.

 

Please help me understand why steroids are not recommended for LYME? If my son responds well to steroids does that indicate he may not have LYME or coinfections?

 

Any information is appreciated.

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Hi! Wanted to give you a cyber hug as it is an emotional time as you are trying to sort out lyme after pandas diagnosis!!

 

I know you will get other responses but I have heard both side, those that do horribly on steroids and those that don't. I think the best thing will be to see a good LLMD and get some testing and evaluation done. You probably already said that in your other post. I don't remember (I have lyme too and can't remember much these days!).

 

Susan

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Many of the symptoms of lyme are caused by inflammation. Steroids reduce inflammation, but they also supress the immune system allowing the bacteria to proliferate unchecked. We have to decrease inflammation without effecting the immune system which is why so many suggest GF/CF/sugar free diets. Gluten, casein and sugar are all inflammatory.

Edited by rowingmom
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My son is a Pandas/lyme kid. We did two month-long steroid tapers in the 2 yrs before he was dx'd with lyme and he had an amazing response. The inflammation/pain from his disease was so great at times that the benefits of prednisone outweighed the negatives (that it suppresses the immune system and gives lyme an advantage). Would I do it again, now that I know about the lyme? It would depend on how severe he was and whether we could control the inflammation in other ways.

 

I don't think it's a black and white answer. It's a matter of degree, where natural anti-inflammatories (curcumin, tumeric, omega's) are on the most benign end of the scale, followed by NSAIDs (motrin/aleve), and somewhere past mid-point, toward more serious meds, there's prednisone. IMO, steroids will not give you a lasting relief if you have a chronic infection that's just going to re-fuel the inflammation once you stop the steroids. That's what happened with my son. Prednisone was awesome - but he'd relapse within a month of stopping. However, the times when we did use the prednisone were fairly severe and it did bring things down several notches and gave him quality of life. It just wasn't a permanent answer.

 

A few weeks ago, my son, who was enjoying his longest remission ever (5 months), started to ramp up again. This week, things were pretty bad and yesterday that bottle of prednisolone in the fridge was calling me. I was starting to rehearse my plea to the LLMD (whom we see next week) to get his blessing to do a 5 day burst just to get the horse back in the barn, despite the negatives of giving prednisone to a lyme patient. But since I won't give it without the LLMDs approval and we have 5 days until our appt, I doubled the aleve dose and started resveratrol - an anti-oxidant. Today is a little better. So I'll spend the weekend assaulting his gut with NSAIDs and seeing how much we can accomplish that way. But if push comes to shove and a month from now, he's still unable to tell me what 10 times zero is, then I may have a different feeling.

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Who can tell if a child if suffering from leaky gut? These kids have compromised immune systems (much of the immune system is found in the gut), and have been on long term Abx which kill off natural flora. We think we are addressing the problem by replacing a few strains, but we all (hopefully) started out with hundreds. Gluten ingestion results in joint pain in my case, but my GI tract appears to be working fine. We stay away from gluten/casein/sugar

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I totally agree with the statement you can not know about a leaky gut/ or issues.

 

I have personally found you can live with an ailment of some sort, you don't know any different, it becomes your normal, and only when you start to heal and get better, you look back and can 'see', and realize you really had no clue there was a different way.

 

We did a 4-5 day steroid burst with my dd, and it was completely awful. Never again.

I also think the steroids she got with her 2 IVIG's made her stomach clench up, and flaired bacterial/yeast growth that was already there.

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Thank you all for your replies they are very helpful. My son is on day 3 of prednisone and symptoms are getting worse. So many questions why it helped in November but not know. I am looking for an LLMD but none in my state I will need to go to CA. My research focus has changed to LYME/Bartonella and I am completely overwhelmed.

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I recently have posted that I think my children have LYME or Bartonella in addition to PANDAS. Anyway my youngest is starting to have some troubling symptoms without a known trigger, usually I can tell the trigger. Well the PANDAS doc started him on steroids a few days ago but I see on this forum steroids are bad for lyme.

 

Please help me understand why steroids are not recommended for LYME? If my son responds well to steroids does that indicate he may not have LYME or coinfections?

 

Any information is appreciated.

 

My son has lyme and he was on prednisone for 1 week for his asthma. Much of his symptoms returned and they were HORRIBLE!!!! I called his LLMD and they informed me that steriods is NOT recommended if you have Lyme unless its absolutely necessary. Once he was off the steriod, he immediately improved. Andrea

Edited by Santi
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  • 1 month later...

Hugs2day, it seems that we are in the same boat. My DS (6), has been sick with PANDAS since 01/11 and was diagnosed 09/11. He has been on Azith since September and is 85% better. I am now suspecting Lyme and want to have him tested. He has dark circles under his eyes, terrible eczema, and is still moody and anxious.

 

If you don't mind me hijacking your post, I would like to ask everyone the following question which may help both of us. (If this was already asked and I missed it, I apologize ahead of time, but I am very overwhelmed by all of this.) If he has been on Azith since September, wouldn't that take care of the Lyme? Or does Lyme require different ABX?

 

Hugs2day, I wish you the best. And I appreciate any responses.

 

Janie

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My son is a Pandas/lyme kid. We did two month-long steroid tapers in the 2 yrs before he was dx'd with lyme and he had an amazing response. The inflammation/pain from his disease was so great at times that the benefits of prednisone outweighed the negatives (that it suppresses the immune system and gives lyme an advantage). Would I do it again, now that I know about the lyme? It would depend on how severe he was and whether we could control the inflammation in other ways.

 

I don't think it's a black and white answer. It's a matter of degree, where natural anti-inflammatories (curcumin, tumeric, omega's) are on the most benign end of the scale, followed by NSAIDs (motrin/aleve), and somewhere past mid-point, toward more serious meds, there's prednisone. IMO, steroids will not give you a lasting relief if you have a chronic infection that's just going to re-fuel the inflammation once you stop the steroids. That's what happened with my son. Prednisone was awesome - but he'd relapse within a month of stopping. However, the times when we did use the prednisone were fairly severe and it did bring things down several notches and gave him quality of life. It just wasn't a permanent answer.

 

A few weeks ago, my son, who was enjoying his longest remission ever (5 months), started to ramp up again. This week, things were pretty bad and yesterday that bottle of prednisolone in the fridge was calling me. I was starting to rehearse my plea to the LLMD (whom we see next week) to get his blessing to do a 5 day burst just to get the horse back in the barn, despite the negatives of giving prednisone to a lyme patient. But since I won't give it without the LLMDs approval and we have 5 days until our appt, I doubled the aleve dose and started resveratrol - an anti-oxidant. Today is a little better. So I'll spend the weekend assaulting his gut with NSAIDs and seeing how much we can accomplish that way. But if push comes to shove and a month from now, he's still unable to tell me what 10 times zero is, then I may have a different feeling.

 

I agree with you completely in regards to use of steriod. We too had GREAT results with it, but the symptoms do return. And we too are following a lyme thing.

 

LLM I did not know your boy was in remission !!!!!! that is so good to hear. At least you were able to reattain the position...you will do it again :) !!!

 

Also keep in mind it is allergy season and i see alot of people coming back.

DS has really ramped up. I am torn between allergies, though he has been receiving shots for a year and a half, weekly, still a month or more to go before maintanence...(no "allergy" symptoms....first time in his Life!!!!) but i stil wonder if it is causing inflammation in the brain non-the-less. yesterdays count 209 and will get into the 3000s

 

Then there are the 12 year molars....1st one is in...Noticed second one about 2-3 weeks ago and seems to have come to a stand-still, with only 1 of the 4 buds to the molar that have popped through.

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lovemyboyz- your reviving this post is very timely and appreciated.

 

I recently had a consult with LLMD and apparently Azithro alone is not enough and it varies depending on what c0-infection they are treating. I think the abx combo I hear has great success with lyme/Bartonella is Azithro/Bactrim this is what I suspect my son has. I mentioned that to the LLMD and she said Doxy is better but my son is only 7. Also apparently it is a long healing process, it can be years. My son has been sick 4 or 5 years only the last year and half did i know about PANDAS and now its likely LYMe too.

 

The LLMD I spoke with has a 6 month waiting list so I couldn't get treatment for my son but I got a great phone consult and a referral to another and we are waiting test results. Also I read the book Lyme treatments it has about 13 different LLMD synopsis of how they treat lyme that helped me a lot.

 

My DS7 is currently dealing with a flare up I think due to allergies, shiners under eyes, extreme hyperactivity and stuffy nose and he won't sleep and ALSO HAS A HUGE SWOLLEN LYMPH NODE BEHIND RIGHT EAR. I had to give him benadryl to sleep last night in addition to his normal melatonin. He clearly has more going on then just PANDAS. I will be anxious to see what the experienced LYMe/Pandas parents will chime in and help. Thank you and good luck to you also.

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My DS7 is currently dealing with a flare up I think due to allergies, shiners under eyes, extreme hyperactivity and stuffy nose and he won't sleep and ALSO HAS A HUGE SWOLLEN LYMPH NODE BEHIND RIGHT EAR. I had to give him benadryl to sleep last night in addition to his normal melatonin. He clearly has more going on then just PANDAS. I will be anxious to see what the experienced LYMe/Pandas parents will chime in and help. Thank you and good luck to you also.

 

Thought of you when reading this --

 

http://www.betterhealthguy.com/joomla/blog/259-biomedical-tips-and-tricks-with-amy-derksen-nd

 

MOLD ISSUES -- www.survivingmold.com to learn more about Ritchie Shoemaker’s protocols and testing

Suspect with kids that have “yeast” issues within days of discontinuing anti-fungals

This is more of an allergy and immune/inflammatory reaction

Often allergic shiners and multiple small lymph nodes all the time in neck

Snoring/sinus issues/generally very sensitive to smell and foods

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If you don't mind me hijacking your post, I would like to ask everyone the following question which may help both of us. (If this was already asked and I missed it, I apologize ahead of time, but I am very overwhelmed by all of this.) If he has been on Azith since September, wouldn't that take care of the Lyme? Or does Lyme require different ABX?

 

 

Lyme is capable of changing form when encountering a non-hospitable environment i.e. Abx. It is generally recognized to have three forms: a spirochete form, a cyst form, and an a-cellular form. Different Abx are needed to address these different forms. Different types of Abx are also needed to address any co-infections occurring along with lyme. Burrascano's Advanced topics in Lyme disease is a good introduction.

 

http://researchednutritionals.com/FactSheets/Burrascano%27s%20Advanced%20Topics%20in%20Lyme%20Disease%20_12_17_08.pdf

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