Jump to content
ACN Latitudes Forums

Recommended Posts

Hello,

 

Can you let me know your thoughts on doing IVIG once you realize your child has Lyme? Our DD has significantly benefitted from IVIG in the past but the results have not been longer than a month.

 

DD seems to be in an almost 3 month long herx now and I am wondering if IVIG could possibly be helpful to her during this time. I'm worried that the animosity in our house is doing damage to her psyche.

 

I don't know if IVIG is used as much with Lyme as it is with PANDAS.

 

Thanks so much!

Link to post
Share on other sites

My dd9 is begging for IVIG. She remembers how good she felt for a few weeks after getting it. She feels like another IVIG will kick out her remaining symptoms. Who knows?! I do plan on asking her neurologist when we go next month what he thinks about it.

 

I know some others have continued with IVIG so I imagine they will give you better information than that. My old LLMD did say she felt IVIG had a place in dd9's treatment after her lyme treatment.

 

Susan

Link to post
Share on other sites

My LLMD prescribed IVIG after a couple months of abx (IV and oral). I think, too early in the process, they feel the lyme isn't in control enough for it to be as helpful, but later on, it can be. I never got the IVIG for insurance reasons, but that's how my doc seems to have been looking at it.

Link to post
Share on other sites

Fallingapart-

 

So sorry you are having continued struggles- I have been wondering how your daughter was....

 

My kids have not had IVIG, and I do not think lyme is their problem, but, I will add my 2 cents:

 

Pandas and lyme are two very complicated, new illnesses, with too little data. Doctors are researching, and doing their best, for sure- but there remains so much unknown- or we would not be here.

 

I think the most important decision we can make as parents, is to do what works. If IVIG has continually helped your daughter- why stop? IVIG is not contraindicated in lyme, some docs use it. Who knows why it helps; lyme? pandas? immune def? unknown issues? But, in the end, if she continues to respond positively, enough to pass the risk vs reward debate- then I think you should continue.

 

Hoping to hear better news soon....

Link to post
Share on other sites

I am beginning to think that our son is not well enough from the TBI tx to be benefiting from the IVIG's he has had. B4 with just PANDAS tx the IVIG gave us some relief b4 relapse. We are not seeing the relief from them now. I think I read some doc stating IVIG as a later tx in lyme. We are going Hmmmmmmm with ds12 and the use of hd or ld IVIG. My contribution to your confusion!! :wacko: Dawn

Link to post
Share on other sites

We've been doing IVIG every 4 weeks for the last two years. My dd starts to have greater leg pain and fatigue the week prior to each new IVIG. She will physically start to feel bad enough between doses that she will ask if it is almost time for it again. We always notice a BIG difference in her physical capabilities and mood after each dose. She likes IVIG because it makes her feel so much better.

 

Knowing what I know now and with the LD dx-I feel that if she had not continued to receive IVIG for the last two years she likely would have been in a wheelchair. Her pain was so severe before we started that she was often unable to walk, had completely stopped riding her bike & scooter and spent most of her time just sitting on the couch because she was in so much pain.

Link to post
Share on other sites

I have really backed our LLMD into a corner on this issue over and over. The reality is they don't know why high does IVIG or low dose IVIG does or doesn't help an individual with Lyme/co-infections. We even have mixed results among forum members. Our Dr. has typically used low dose IVIG for individuals further along in treatment with neuropathy symptoms and again there is even mixed results with those patients.

 

I was also told by our Dr. that our twins IgG 1 and 3 immune deficiencies would resolve with treatment. We are tracking them and so far they are moving in the right directions (although still not normal). We have chosen to hold off on IVIG treatments for now but would reconsider if needed.

 

Another LLMD has had several lengthy conversations with a mother who has treated her daughter extensively with hdIVIG for PANDAS with good result and is currently trying to convince her to stop them. His position is the IVIG is immune suppressing and is doing the work the body should be. Although difficult you want the body to learn to fight the infection. They are going to slow down the hdIVIG intervals and perhaps even stop them to train the body to deal with the Lyme.

 

Another LLMD that has worked with many individuals that have immune deficiencies has noted those with IgA deficiencies have a much harder time recovering from LD. However, they have had success treating without the use of IVIG.... it just takes longer.

 

As a parent, I believe it is critical to know when something is or isn't helping your child and be their best advocate because it is truly trail and error. Same goes for antibiotics and specific combos.... we've had to stop both Rifampin (high fever beyond normal herx) and Biaxin (yellowing of eyes) for older DS due negative response when others have had wonderful responses to these particular antibiotics.

 

-Wendy

Edited by SF Mom
Link to post
Share on other sites

I have really backed our LLMD into a corner on this issue over and over. The reality is they don't know why high does IVIG or low dose IVIG does or doesn't help an individual with Lyme/co-infections. We even have mixed results among forum members. Our Dr. has typically used low dose IVIG for individuals further along in treatment with neuropathy symptoms and again there is even mixed results with those patients.

 

 

I had a very similar conversation with our Immunologist today although not necessarily in regards directly to Lyme but more so to the PANDAS side of things. He really emphasized that there isn't any perfect model out there for PANDAS, PIDDs, or any other illnesses because everyone truly is an individual and you have to take into consideration genetics and environmental factors among other things. What works for one person is not necessarily going to work for the next and there may be no real explanation as to why.

 

It is my understanding that IVig is not a preferred nor recommended treatment for those who are only IgA deficient.

 

I think my Immunologist would have a rather heated discussion with the LLMD who feels that IVig is "immune suppressing". I would like to be a fly on that wall! My dd had seven years to train her body to fight the LD on it's own and the LD has obviously been winning the war.

 

I realize that our positive experience with IVig is not necessarily the norm for everyone but it has been our experience.

Link to post
Share on other sites

I should clarify in fairness to the Dr. that states IVIG immune suppressing. The individual would need to be on the right combo of antibiotics to fight LD without the use of IVIG (in this particular situation). In all of our cases the Lyme was winning even with hd/ld IVIG and single use antibotics for PANDAS treatment and why we are still here on the forum trying to get our kids well. His perspective was the Lyme was sent off into cyst form from the all the IVIGs (1 1/2 years of hd treatments), the donor antibodies were doing the job for the child and there was a dependency because the child own antibodies didn't need to work so hard. At some point, he felt the lyme would resurface and was only a matter of time if not treated properly. The current plan was to slowly stretch out intervals for treatments, pulse new antibiotic protocol and give the body opportunity to fight it on its own.... not immediately quit treatments that were helping keep the child well with very low level symptoms for PANDAS treatment.

 

With this particular perspective you could also say the same about antibiotics..... I guess the goal 'per our Dr.' is to train the body to handle whatever ever bugs remain in the body once the bacterial load is down. So, weaning from supplements, antibiotics, IVIG.... etc. In our situation, maybe it will be the supplements for KPU that remain a lifetime but who really knows at this point in time each situation will be different. For our family, with 3 children that have very serious infections and one with heart related issues since 5 months of age.... I worry there will be one child that will have ongoing issues but can't even put that negative thought out in the world so disregard my comment. So we keep on keeping with whatever is 'currently' working for them individually.

 

-Wendy

Edited by SF Mom
Link to post
Share on other sites

just to follow up on what wendy might have been suggesting regarding ivig being immune suppressing. we discussed this with our doctor too and it was my understanding the the high doses of ivig are used in order to suppress an auto-immune response so therefore are used because they do suppress a faulty immmune response. Low dose may be another story. I don't think anyone really knows what is happening for sure as based on all the different stories on the forum the results have been accross the board. Some kids seem to really benefit, some kids get worse, and some seem to report that especially after repeated HD ivig's, no change is seen at all.

Link to post
Share on other sites

Well now I am confused. I understand everything everyone is saying - I think. And it makes sense to me. But then, does that mean HD IVIG is a good idea or a bad idea if it has worked in the past? It has been about 10 months since our last IVIG. DD is deteriorating by the minute or so it seems...

 

I am going to wait to make a decision though, because we are to start a new abx round this afternoon. However, I expect this to actually make her WORSE for a few days before she levels off!!!

Link to post
Share on other sites

Gosh....I say ask your LLMD and immunologist. Neither of my kids have elevated strep titers but are PANDAS / PITANDS - whatever category you prefer as the result is the same. Both are also Lyme and Bartonella. They have been helped by the IVIG. The immunologist recently told me that he did not know how long it would take to see total success (ie, no OCD, Ragining, Panic symptoms when exposed to illnesses of any sort) but that my kids total IgG levels were very low and they would need to come up before considering stopping IVIG. Our LLMD is in favor of IVIG in our cases. I would say each case is different. Consult with your docs who know your situation. There are so many variables out there with this "new illness" and I'd hate for any child to miss their greatest potential - so, I vote ask the experts that treat it! :-))) And, we've seen positive results and it has a cummulative effect. Best Wishes!

Link to post
Share on other sites
  • 3 years later...

I would also like to know how some of these kids are doing. I understand now the differences between low and high dosage IVIG. We need to have a large scale study to figure out which treatment is helping which condition. It would be pretty costly. Or the doctors could start sharing their treatment plans that have worked with certain conditions. So all of our kids could get the appropriate treatment.

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...