Steroid Burst and Lyme Disease

[JuliaFaith]

Sorry if I do not know this, but why are steroids bad for lyme?

 

I am thinking of doing the lyme testing, while Dr. is thinking of doing a 1-month steriod treatment.

 

Thank you for any information.

[PacificMama]

Steroids suppress the immune system. Slowing down a body's immune system can then allow an active infection to grow even stronger. This is why steroids would never be recommended to anyone who has lyme or other pathogenic bacterial infection. (of course, there are many other reasons to proceed with caution using steroids regarding long term / side effects, etc.)

 

Since this topic has been raised, I'd like to take the opportunity to again clarify a common misconception regarding lyme and steroid use. That is the idea that if a person does steroids and sees improvement, it must not be lyme. NOT TRUE. A person infected with a pathogen can absolutely see improvement initially on steroids (some do, some don't, and some have horrible reaction). But in the long run, it is absolutely detrimental to use steroids with these infections and a person will be the worse for it.

 

PLEASE rule out lyme or other similar infections before proceeding with steroids.

[JuliaFaith]

Steroids suppress the immune system. Slowing down a body's immune system can then allow an active infection to grow even stronger. This is why steroids would never be recommended to anyone who has lyme or other pathogenic bacterial infection. (of course, there are many other reasons to proceed with caution using steroids regarding long term / side effects, etc.)

 

Since this topic has been raised, I'd like to take the opportunity to again clarify a common misconception regarding lyme and steroid use. That is the idea that if a person does steroids and sees improvement, it must not be lyme. NOT TRUE. A person infected with a pathogen can absolutely see improvement initially on steroids (some do, some don't, and some have horrible reaction). But in the long run, it is absolutely detrimental to use steroids with these infections and a person will be the worse for it.

 

PLEASE rule out lyme or other similar infections before proceeding with steroids.

This is all very interesting. My son had 2 steroid bursts (5 day) did nothing for the first 3 days and made him feel worse the last 2 days (both times).

 

Talked to someone in Portland on the Oregonlyme site and he said generally the same thing. Thank you, again, for giving me the website. We talked for quite some time and he was very knowledgable. This definitely makes me want to follow up with the lyme before any more steroids. We have to wait a couple of weeks to do the test but that will give me time to talk to his current dr. and set up appt with llmd.

 

Supposed to see a Rheumatologist next week because of a rash he broke out with on elbows, tops of hands, knees, tops of feet. Rash is completely gone now of course. The blood test and MRI we did for this came back neg.

 

Just hope for some answers soon as many on this site.

[sf_mom]

I just wanted to add that my son had a positive result from the five day steroid burst that wore off in approximately 2 to 3 weeks when we were pursuing PANDAS diagnoses. Thankfully, my father-in-law who is a Dr. recommended we not use steroids long term for any of our children due to side effects and lack of effective treatment they provide.

 

I had a very negative result from steroids while pregnant with my twins. They were injected every 48 hours over a two weeks period towards the end of my pregnancy to abate symptoms from a full body rash. At that time, I started to have seizures... feeling an electrical shock while biting down my tongue during seizure. It was both 'shocking and painful'. At the time, my OBGYN had no explanation for them. Our LLMD now believes the steroid use and seizures were related. Honestly, it breaks my heart to think that they were used while pregnant and may have impacted the rate of transmission to both of my twins.

 

-Wendy

Edited October 7, 2010 by SF Mom

[philamom]

I just wanted to add that my son had a positive result from the five day steroid burst that wore off in approximately 2 to 3 weeks when we were pursuing PANDAS diagnoses. Thankfully, my father-in-law who is a Dr. recommended we not use steroids long term for any of our children due to side effects and lack of effective treatment they provide.

 

I had a very negative result from steroids while pregnant with my twins. They were injected every 48 hours over a two weeks period towards the end of my pregnancy to abate symptoms from a full body rash. At that time, I started to have seizures... feeling an electrical shock while biting down my tongue during seizure. It was both 'shocking and painful'. At the time, my OBGYN had no explanation for them. Our LLMD now believes the steroid use and seizures were related. Honestly, it breaks my heart to think that they were used while pregnant and may have impacted the rate of transmission to both of my twins.

 

-Wendy

So sorry to hear that! Do you think the rash was Lyme related? You are a great Mom, SF Mom, your children are very fortunate to have a strong, passionate care- taker!

[sf_mom]

Oops double post.

Edited October 7, 2010 by SF Mom

[sf_mom]

I do believe the rash was Lyme related..... they could not provide any explanation at the time. I had 'the rash' with both pregnancies although much more intense with my twin pregnancy. When you know better, you do better! It is hard for me to even think about the what ifs... too much, I just needed to do whatever I can to now make it better for all of my children.

Edited October 7, 2010 by SF Mom

[JuliaFaith]

I just wanted to add that my son had a positive result from the five day steroid burst that wore off in approximately 2 to 3 weeks when we were pursuing PANDAS diagnoses. Thankfully, my father-in-law who is a Dr. recommended we not use steroids long term for any of our children due to side effects and lack of effective treatment they provide.

 

I had a very negative result from steroids while pregnant with my twins. They were injected every 48 hours over a two weeks period towards the end of my pregnancy to abate symptoms from a full body rash. At that time, I started to have seizures... feeling an electrical shock while biting down my tongue during seizure. It was both 'shocking and painful'. At the time, my OBGYN had no explanation for them. Our LLMD now believes the steroid use and seizures were related. Honestly, it breaks my heart to think that they were used while pregnant and may have impacted the rate of transmission to both of my twins.

 

-Wendy

We have had no results from the 2 or maybe 3 steroid bursts tried already. Just worsening of symptoms the last few days. It is great that it works for some kids.

 

What is 'long-term' use? Would 1 month be considered long-term?

 

Your story when you were pregnant reminds me of something else. I always wondered if the meds. I was on for 2 mos. bed-bound while pregnant had anything to do with the PANDAS... So sorry you had to go thru that during your pregnancy.

[sf_mom]

If you suspect Lyme I think the use of steroids for a month would be of concern. Women who have Lyme Disease typically have really rough pregnancies. Both medication and the stress of pregnancy can trigger LD.

 

-Wendy

[justinekno]

I can relate to the guilt. We will hopefully know more after our LLMD visit on Monday but judging from my son's Igenex test results (and my constant symptoms), my son probably received Lyme from me. I feel so guilty not getting treated properly before he was conceived. The saddest thing is that my dr who treated me (w/ 10 days of Doxy) lives in Lyme CT. I wish he/I had known better and we wouldn't be here today fighting Lyme for my son and myself. I carry alot of guilt with that but all I can do now is work towards getting us healed.

 

I just wanted to add that my son had a positive result from the five day steroid burst that wore off in approximately 2 to 3 weeks when we were pursuing PANDAS diagnoses. Thankfully, my father-in-law who is a Dr. recommended we not use steroids long term for any of our children due to side effects and lack of effective treatment they provide.

 

I had a very negative result from steroids while pregnant with my twins. They were injected every 48 hours over a two weeks period towards the end of my pregnancy to abate symptoms from a full body rash. At that time, I started to have seizures... feeling an electrical shock while biting down my tongue during seizure. It was both 'shocking and painful'. At the time, my OBGYN had no explanation for them. Our LLMD now believes the steroid use and seizures were related. Honestly, it breaks my heart to think that they were used while pregnant and may have impacted the rate of transmission to both of my twins.

 

-Wendy

Edited October 7, 2010 by justinekno

[matis_mom]

If you suspect Lyme I think the use of steroids for a month would be of concern. Women who have Lyme Disease typically have really rough pregnancies. Both medication and the stress of pregnancy can trigger LD.

 

-Wendy

Oh, man! I so remember having the tingling in my arms while pregnant with my youngest But I can't even think of her having it right now. How would they treat a baby anyway? The pediatrician did give her 1 month of amox, in light of our family situation. I just have to hope and pray she is fine.

 

But back to steroids. DS saw AWESOME improvement from the first taper (4 weeks). He kept relapsing (every month on a full moon, wouldn't you know it!), and we tried a couple more times, but without very impressive results. Our new LLMD was not thrilled to hear that, but what can we do about it now. We just have to look ahead and keep fighting.

[PacificMama]

When you know better, you do better! It is hard for me to even think about the what ifs... too much, I just needed to do whatever I can to now make it better for all of my children.

 

Amen to that. The what-ifs and the guilt can be a black cloud sometimes. But all you have done (all of you here!), your dedication and hard work, is paying off for your children. So take great comfort in that.

 

Mary

[JuliaFaith]

Dr. yesterday agreed to the Igenx testing. We are doing one first and then the other in a few weeks after he is off abx for at least a week (just went through a PANDAS exacerbation). Setting up appts. with 2 lyme dr. just to see how soon we can get in one. On the first call, they made an appt. 2 weeks later just to talk to the office manager! The other is a ND so will probably not be covered under insurance. Will look to see how long the Igenx testing takes. I believe it appeared on another thread.

 

There are some amazing people on this forum! Thank you for your kind words and best wishes.

 

Julia

[philamom]

Dr. yesterday agreed to the Igenx testing. We are doing one first and then the other in a few weeks after he is off abx for at least a week (just went through a PANDAS exacerbation). Setting up appts. with 2 lyme dr. just to see how soon we can get in one. On the first call, they made an appt. 2 weeks later just to talk to the office manager! The other is a ND so will probably not be covered under insurance. Will look to see how long the Igenx testing takes. I believe it appeared on another thread.

 

There are some amazing people on this forum! Thank you for your kind words and best wishes.

 

Julia

It takes around 3 weeks for results.

[lyme_mom]

Dr jones told me that babies do not always get Lyme from a mother with Lyme so unless your baby is having health issues she may be fine.The babies probably get treated with amoxicillin.