Another Lyme post

[sf_mom]

Suppresses the immune response allowing the bacteria to take off. Hence, there can be a negative response to steroids.

Edited August 4, 2010 by SF Mom

[faith]

momofgirls,

could you remind me what you're girl's response to steroid burst was? what treatment are you doing presently for lyme? and you've stopped ivig for now?

 

thanks

faith

[lyme_mom]

No steroids if you have not properly ruled out lyme!

 

 

Srry, don't mean to sound like a doorknob if its already been posted , but why is this??

 

The steroids suppress the immune system and that allows lyme to flourish in the body. Some early doctors treated lyme patients with steroids because they believed it would help with joint pain. I think this is in Pamela Weintraub's Cure Unknown. This use of steroids to treat lyme patients made them very, very sick and accelerated the LD.

[philamom]

No steroids if you have not properly ruled out lyme!

 

 

Srry, don't mean to sound like a doorknob if its already been posted , but why is this??

 

The steroids suppress the immune system and that allows lyme to flourish in the body. Some early doctors treated lyme patients with steroids because they believed it would help with joint pain. I think this is in Pamela Weintraub's Cure Unknown. This use of steroids to treat lyme patients made them very, very sick and accelerated the LD.

 

In your opinion, is two days worth prescribed during IVIG okay? Thanks lyme mom for continuing to post here!

[matis_mom]

The steroids suppress the immune system and that allows lyme to flourish in the body. Some early doctors treated lyme patients with steroids because they believed it would help with joint pain. I think this is in Pamela Weintraub's Cure Unknown. This use of steroids to treat lyme patients made them very, very sick and accelerated the LD.

Ok, so I'm stressing about this Lyme thing...

My son had 3 steroid tapers (first one was a month long, the others 3 weeks each), and did not really get sicker from them... does this kind of rule out Lyme? I was very stressed making the decision to go ahead with the first taper because the initial doc suspected Lyme (but all tests came back with zip, no bands positive, no bartonella, babesia, nothing), but once we went through with it I was so happy, it really broght him back.

Thanks Lyme mom and all the others who are sharing about Lyme!

[lyme_mom]

The steroids suppress the immune system and that allows lyme to flourish in the body. Some early doctors treated lyme patients with steroids because they believed it would help with joint pain. I think this is in Pamela Weintraub's Cure Unknown. This use of steroids to treat lyme patients made them very, very sick and accelerated the LD.

Ok, so I'm stressing about this Lyme thing...

My son had 3 steroid tapers (first one was a month long, the others 3 weeks each), and did not really get sicker from them... does this kind of rule out Lyme? I was very stressed making the decision to go ahead with the first taper because the initial doc suspected Lyme (but all tests came back with zip, no bands positive, no bartonella, babesia, nothing), but once we went through with it I was so happy, it really broght him back.

Thanks Lyme mom and all the others who are sharing about Lyme!

In response to several questions about steroids, I am not an expert in this area but I think a little bit of steroids might not elicit the kind of response that the early lyme patients got b/c they took a lot of steroids. However I would think that this is highly dependent on the state of a patient's immune system and a little bit of steroids could be too much for a really sick patient. I would not assume that he does not have lyme b/c he did not get worse on the steroids, although it is great that he did not get worse. I am not sure that the effect of the steroids is always immediate either. Considering it is common practice for PANDAS doctors to prescribe steroids it would make sense for these doctors to have these kids screened for lyme and coinfections first through an ilads doctor so that there is no possibility that the steroids could make the child worse. Also you don't want to use a lot of steroids if they are not going to help (and they won't if the patient is not being properly treated for all infections present) b/c steroids are not good for you for other reasons too. They can affect hormones based on what I have read. I wouldn't worry about past steroids especially if they only had a small amount.

[sf_mom]

Second hand story... BUT I do know of one child that was given tapered steroids for extended periods of time in conjunction with monthly IVIG (both low and high dose) only later to discover Lyme. She struggled initially once the monthly IVIGs and steroids were suspended and then started to do better the further away she from treatment they got for both IVIG/steroids. Was it the steroids or just a huge herx..... its hard to say at this point but I don't think this mother would ever do an extended steroid treatment again.

 

My father-in-law also a physician recommended not to use steroids when this all started for us. In his opinion they are a 'feel good' drug that do not resolve the underlying issue. So, for us we only did the 5 day steroid burst with Dr. K. Believe me, I have often thought if it could help I would do it in heartbeat but his words always stuck in my head. As well as Dr. Ks opinion.... it becomes difficult to determine if the IVIG treatment is doing what it should.