Confusion: treat Lyme or give approved IVIG for PANDAS Chorea

[Kimflow]

Hello,

 

I posted this also on PANDAS board....need help to make decision by tomorrow.

 

Our history in a nutshell:

 

autism age 2, PANDAS diagnosed March 2012, Dr. L prescribed IVIG which is approved and was to be for this week. He has syndehams chorea. Still does. We did the tonsillectomy May 30th which even though we gave IV antiobiotics, he is now in a full fledged flare. The chorea is extensive again as it was for the first pandas flare. The OCD, the need for repeating things he says, the motor sensory triggering, it is all back. Our vacation was so stressful this past week.

 

It took 3 months of various versions and courses of antibiotics that would work and fail before the first flare settled down....to about 75% back to his baseline. And now we are back to pretty much where we started.

 

Lyme bands 41 and 66, CD 57 24, no other coinfections through testing but Bartonella might be suspected.........saw LLMD who treats pandas, lyme, autism. She said that it was lucky we didn't do the IVIG yet as it may not have worked. We have been on Rifampin for weeks, Diflucan and Nystatin for about 2 weeks, and zithromax for months. I added back in augmentin finally this week as the flare was getting worse.

 

However, last night, my husband approached me to ask questions and I have my wheels turning now. Have I made the right decision postponing IVIG. We have something that may help very much with the PANDAS flare. I also know the risk of steroids and IVIG with Lyme......but on the other hand, my son only presents with PANDAS that does not respond well to antibiotics, a low CD 57 (which another mom told me that two doctors have told her that more than the 5 things I have seen listed here can lower a CD 57 So this also does not say for sure he has Lyme). He does not have fatigue, joint pain that I can tell. True, alot of his ocd stuff revolves around his feet..(bartonella suggested).

 

My point is I am wondering if we can survive PANDAS flares like this while we are treating the lyme for months/years. Maybe I should go ahead and do his approved IVIG.

It is the riskng the lyme herx, or the need for repeated IVIG's. The chorea as I said is atrocious again. The eye squinting bad, and who knows what else as he is only somewhat verbal.

 

My ponit is that he is not clearcut LYME but he is clear cut severe PANDAS. I have read probably 50 posts on this dilemma.....it has not really helped me figure it out because everone's experiences are all different. It is like rolling the dice unfortunately. Any thoughts woudl be appreciated.

 

I would love to hear from someone who had clear cut LYME and PANDAS and they went ahead with IVIG...what were your results. Bascially all the 4 months of various antibiotics have been treating lyme all along anyhow, right?

Thanks.

[Orion]

My DD most definitely has Lyme, and PANS as well. She tested quite high on the anti-neuronal autoantibody markers in Dr. Cunningham's study.

 

It was explained to me that in order to treat the autoimmune component (severe anxiety, chorea, and myoclonic dyskinesia) of her illness, DD needed IVIG.

 

IVIg is NOT a treatment for Lyme, so DD is on concurrent antibiotic treatment for the Lyme and co-infections. Her LLMD believes that her autoimmunity is infection driven, and so, as long as the infection is present, for her, the autoimmune response will continue.

 

(She also has been testing positive for both Mycoplasma pn and strep- whether they are aiding and abetting the autoimmunity is unknown at this time- but the abx she is on should take care of that as well.)

 

Since starting the IVIg, the chorea has stopped, the myoclonus is greatly improved- she is going weeks between episodes. Anxiety is under control; food sensitivities/allergies is greatly improved as well. We are hoping that a few other of her complaints that could be auto-immune responses over time will disappear as well.

 

So my advice is to attack the known autoimmune response [and perhaps prevent any or further damage to the basal ganglia] with the IVIg, and continue to persue looking into Lyme and co-infections as an additional trigger.

 

Editing to add that DD also has/had positive markers for Bartonella, and her LLMD feels that that germ should be added to the list of PANS causing agents.

 

~Orion

Edited June 24, 2012 by Orion

[Orion]

I also know the risk of steroids and IVIG with Lyme......

 

Could you explain the above statement? Yes, steroids are generally contraindicated with Lyme, because it can surpress the immmune system and allow the Lyme spirochetes to run amok. [Exceptions have been made, especially where the eyes are concerned.] But what have you heard are the risks with IVIg and Lyme?

[Kimflow]

orion.....this is encouraging to me. Thank you for writing.

regarding Steroids and IVIG and Lyme......I just meant that in Lyme, they say to never give steroids but with IVIG, they usually DO give steroids. I hope that makes sense.

Thanks.

Editing: forgot to say that one Mom has written me to say that for her child, IVIG caused 4 months of herx. I do not believe they knew the child had lyme at the time.

Edited June 24, 2012 by Kimflow

[Orion]

orion.....this is encouraging to me. Thank you for writing.

regarding Steroids and IVIG and Lyme......I just meant that in Lyme, they say to never give steroids but with IVIG, they usually DO give steroids. I hope that makes sense.

Thanks.

Editing: forgot to say that one Mom has written me to say that for her child, IVIG caused 4 months of herx. I do not believe they knew the child had lyme at the time.

 

DD has had multiple IVIg, she's never experienced what I would consider a herx from it. The anxiety/panic/paranoia did not resolve overnight, but it didn't seem any worse either. The movement disorder was definitely better from the start of IVIg.

 

Each doctor seems to have their own protocol they follow when giving IVIg. DD has never been given steroids. Beforehand she takes Benedryl and Tylenol, and finishes up the infusion with a saline infusion for hydration.

[Iowadawn]

My DD most definitely has Lyme, and PANS as well. She tested quite high on the anti-neuronal autoantibody markers in Dr. Cunningham's study.

 

It was explained to me that in order to treat the autoimmune component (severe anxiety, chorea, and myoclonic dyskinesia) of her illness, DD needed IVIG.

 

IVIg is NOT a treatment for Lyme, so DD is on concurrent antibiotic treatment for the Lyme and co-infections. Her LLMD believes that her autoimmunity is infection driven, and so, as long as the infection is present, for her, the autoimmune response will continue.

 

(She also has been testing positive for both Mycoplasma pn and strep- whether they are aiding and abetting the autoimmunity is unknown at this time- but the abx she is on should take care of that as well.)

 

Since starting the IVIg, the chorea has stopped, the myoclonus is greatly improved- she is going weeks between episodes. Anxiety is under control; food sensitivities/allergies is greatly improved as well. We are hoping that a few other of her complaints that could be auto-immune responses over time will disappear as well.

 

So my advice is to attack the known autoimmune response [and perhaps prevent any or further damage to the basal ganglia] with the IVIg, and continue to persue looking into Lyme and co-infections as an additional trigger.

 

Editing to add that DD also has/had positive markers for Bartonella, and her LLMD feels that that germ should be added to the list of PANS causing agents.

 

~Orion

Bartonella have proven to be the stubborn bug for our ds13.

[Hopeny]

Hi. My DD8 has both PANS , Lyme, very high Myco, hetero MTHFR 677T & elevated but not very high ASO. (lyme induced PANS?? I saw there is a study on this). BTW she has had a lot of pain on the soles of her feet and major psych symptoms however Bartonella negative by Quest twice and negative by advanced Igenex screening, would be good to test so you know for certain. (she has the other family of co infections, ehrlichia, anaplasmosis, rocky mountain spotted fever) I have been struggling with the same questions, what to treat... however she does not have tics or chorea, just horrendous obsessions with suicide.

We ended up doiing 60 days of Augmentin/Biaxin - we saw tremendous, fast improvement in the PANS/OCD symptoms, and last week after six months of not being able to sit on the floor from pain her leg pain/arthritis has finally subsided. We we now doing 30 days of Doxy and will go from there. After seeing the OCD improvement, I am convinced that this is very relevant for her and have IVIG on my radar. In our case, it took 60 days of strong abx treatment to start to make some headway. Are the Lyme bands IGG or IGM?

 

I am wondering if you could possibly do 60 days of the abx and then do IVIG? Just to clear things out to have a good start with IVIG?

[Bill]

My son tested positive for Lyme (by LLMD standards) and for Bartonella (which would strongly support the lyme diagnosis). He also had high ASO/DNASE counts but only scored low high (I think 126) on the Cunningham test. All of the doctors consider him PANDAS plus lyme. He has completed 5 IVIGs; scheduled for 6th later August. From my point of view - PANDAS looks a lot like Lyme looks a lot like PANDAS.......everyone is so different not sure how you know which causes what symptoms. In my son's case - we believe the lyme led to the PANDAS - but who knows. Treating lyme should treat the strep infection based on everything I know as many of the doctors are using combinations of azithromycin, augmentin, minocycline, bactim, etc. (Yes I know there are exceptions to the exceptions......)

 

I have a more complete (though also abbreviated) history in my "About Me" pages if you need to read something to help you sleep tonight.

 

We waited 8 months or so after beginning treatment for lyme before doing the 1st IVIG. Our theory being let's wait until the bacterial load is down; no sense repairing walls while the house is still on fire so to speak. My son has never strongly negatively reacted to any of the treatments. Nothing I would call a herx. As I understand it, the major purpose of the IVIG is to interrupt the running amok immune system response getting between these anti-neural antibodies and the brain receptors and thus reducing inflamation. I get the feeling that the other two reasons - supplement the body's antibodies and to "retrain" the immune system are not as great as factors?

 

Various doctors have all told me that the short amount of time that patients are put on steroids for the IVIG are not a problem with Lyme. One would need to be on steroids for some time before it really caused an issue. The kids stay on ABX the whole time so that also helps.

 

We have seen improvements almost every time we've treated with IVIG though at times - very miniscule. The main factors for us is trying to shorten recovery as much as we can - he's lived this way for 10 years now - childhood screwed - we can at least try to do everything we can to salvage his teenage years. It's possible that he would essentially recover at the same rate without the IVIG. We will never know.

 

I guess the one thought I have for you though is why is he not under better control with the ABX already being given? Something is not being treated properly if he is still flaring. IVIG will not help with that based on my understanding. My opinion which is not worth much is that IVIG may not lead to an improvement or steady progress forward if something is still not under control. My son was more or less stable - had shown improvements but became stagnant - before we started IVIG.

 

On the other hand - your son could be one (IVIG) and done. As you noted, everybody's experience is different.

 

Count this as post 51 and probably not helping you make up your mind either. (Either decision you make is the right decision.)

 

Best of luck.

 

 

[mommakath]

My son had such a bad flare once we started trating cyst form lyme that we were truly desperate. We went for IVIG and it was a miracle for settling the flare. We didn't do any steroids first treatment and had severe headache and nauseau for few days. He felt rotten. We then used the steroids, meldrol push, and benadryl and motrin. Our LLMD said this short term use of steroids was fine - just don't want long term, month long, steroid tapers. Know this is greatly debated but steroids made the IVIG tolerable. Having said that, we missed IVIG for 2 months and when we went back for it, still had bad reaction even with steroids and benadryl, motrin. Think it just shocks the system to some degree. But, worth it! We now have it monthly and it has been a real blessing to my kids.

 

 

 

 

 

quote name='Kimflow' timestamp='1340537785' post='141771']

Hello,

 

I posted this also on PANDAS board....need help to make decision by tomorrow.

 

Our history in a nutshell:

 

autism age 2, PANDAS diagnosed March 2012, Dr. L prescribed IVIG which is approved and was to be for this week. He has syndehams chorea. Still does. We did the tonsillectomy May 30th which even though we gave IV antiobiotics, he is now in a full fledged flare. The chorea is extensive again as it was for the first pandas flare. The OCD, the need for repeating things he says, the motor sensory triggering, it is all back. Our vacation was so stressful this past week.

 

It took 3 months of various versions and courses of antibiotics that would work and fail before the first flare settled down....to about 75% back to his baseline. And now we are back to pretty much where we started.

 

Lyme bands 41 and 66, CD 57 24, no other coinfections through testing but Bartonella might be suspected.........saw LLMD who treats pandas, lyme, autism. She said that it was lucky we didn't do the IVIG yet as it may not have worked. We have been on Rifampin for weeks, Diflucan and Nystatin for about 2 weeks, and zithromax for months. I added back in augmentin finally this week as the flare was getting worse.

 

However, last night, my husband approached me to ask questions and I have my wheels turning now. Have I made the right decision postponing IVIG. We have something that may help very much with the PANDAS flare. I also know the risk of steroids and IVIG with Lyme......but on the other hand, my son only presents with PANDAS that does not respond well to antibiotics, a low CD 57 (which another mom told me that two doctors have told her that more than the 5 things I have seen listed here can lower a CD 57 So this also does not say for sure he has Lyme). He does not have fatigue, joint pain that I can tell. True, alot of his ocd stuff revolves around his feet..(bartonella suggested).

 

My point is I am wondering if we can survive PANDAS flares like this while we are treating the lyme for months/years. Maybe I should go ahead and do his approved IVIG.

It is the riskng the lyme herx, or the need for repeated IVIG's. The chorea as I said is atrocious again. The eye squinting bad, and who knows what else as he is only somewhat verbal.

 

My ponit is that he is not clearcut LYME but he is clear cut severe PANDAS. I have read probably 50 posts on this dilemma.....it has not really helped me figure it out because everone's experiences are all different. It is like rolling the dice unfortunately. Any thoughts woudl be appreciated.

 

I would love to hear from someone who had clear cut LYME and PANDAS and they went ahead with IVIG...what were your results. Bascially all the 4 months of various antibiotics have been treating lyme all along anyhow, right?

Thanks.

[Kimflow]

Many thanks for all of your input. Turns out life steps in.

 

After I wrote this email, I got a cancellation appt with LLMD and asked her if we could go ahead with IVIG that Dr. L had written for his PANDAS and Syndehams chorea. she said yes, we had atleast treated Lyme /Bartonella/? with 4 months of various antibiotics....He has been on various antibiotics for strep that also treat Lyme since March.

 

So then I call infusion company to tell them I can go ahead with infusion and they tell me that Dr. L has to sign off again because of the Lyme/Bartonella/?. At the office visit where she diagnosed the pandas and syndehams chorea, she knew of the 2 IgG bands of 41 and 66 and was not concerned at all. She wrote for the IVIG to be infused within weeks of having tonsillectomy.

 

I was the one who wanted to make sure about those 2 bands so during the tonsillectomy, I got them to draw a Labcorp CD 57 intraop. The CD 57 came back 24. I then got to a LLMD. If it had not been for my thoroughness/worry about Lyme possiblity, he would already been infused with IVIG.

 

So now, Dr. L wants to see the CD 57 which I already reported to her was 24 and said if he has Lyme, he can't get IVIG. What the heck? So now I have the Lyme person saying he CAN and the Pandas person saying he can't. It almost feels like I am being punked!

 

Now we cannot get in to see Dr. L to discuss in person until July 31st and we sit in a full fledge PANDAS OCD syndehams chorea facial tic and grimacing Anxiey urinary dribbling FLARE going on since June 4th! We have an appt. to see her July 31st. Our vacation recently was pretty much stress filled and ruined. This is what prompted us to go to LLMD to get her okay on going ahead with the IVIG for PANDAS/chorea.

 

I just have to trust that things will work out as they are intended and what is best for my son will happen.

 

On another note, our tonsil cultures came back. I'll post separately about that but we are in horrible flare after the tonsillectomy that was recommended even though we got IV ancef. The bugs in his tonsils even after months of antibiotics were numerous.

 

Kim

[tpotter]

Many thanks for all of your input. Turns out life steps in.

 

After I wrote this email, I got a cancellation appt with LLMD and asked her if we could go ahead with IVIG that Dr. L had written for his PANDAS and Syndehams chorea. she said yes, we had atleast treated Lyme /Bartonella/? with 4 months of various antibiotics....He has been on various antibiotics for strep that also treat Lyme since March.

 

So then I call infusion company to tell them I can go ahead with infusion and they tell me that Dr. L has to sign off again because of the Lyme/Bartonella/?. At the office visit where she diagnosed the pandas and syndehams chorea, she knew of the 2 IgG bands of 41 and 66 and was not concerned at all. She wrote for the IVIG to be infused within weeks of having tonsillectomy.

 

I was the one who wanted to make sure about those 2 bands so during the tonsillectomy, I got them to draw a Labcorp CD 57 intraop. The CD 57 came back 24. I then got to a LLMD. If it had not been for my thoroughness/worry about Lyme possiblity, he would already been infused with IVIG.

 

So now, Dr. L wants to see the CD 57 which I already reported to her was 24 and said if he has Lyme, he can't get IVIG. What the heck? So now I have the Lyme person saying he CAN and the Pandas person saying he can't. It almost feels like I am being punked!

 

Now we cannot get in to see Dr. L to discuss in person until July 31st and we sit in a full fledge PANDAS OCD syndehams chorea facial tic and grimacing Anxiey urinary dribbling FLARE going on since June 4th! We have an appt. to see her July 31st. Our vacation recently was pretty much stress filled and ruined. This is what prompted us to go to LLMD to get her okay on going ahead with the IVIG for PANDAS/chorea.

 

I just have to trust that things will work out as they are intended and what is best for my son will happen.

 

On another note, our tonsil cultures came back. I'll post separately about that but we are in horrible flare after the tonsillectomy that was recommended even though we got IV ancef. The bugs in his tonsils even after months of antibiotics were numerous.

 

Kim

 

Did you tell Dr. L. that LLMD says IVIG is fine? Maybe have LLMD write a note directly to her. Dr. L. likes to have coordination with other docs, so a personal note from the other doc (fax should probably work) may do the trick. It's worth a try.

[michelew]

Hi, Kim. My son is currently being treated for Lyme/Bartonella. He's receiving IV abx twice per day. Any way, the LLMD we are seeing has recommended that he receive IVIG (20 mg/1 X per week for a period of 2 months.) He believes that this will help him respond better to the abx therapy, as his immune panel numbers were low. It's crazy how all of these doctors have such different opinions. BTW...our insurance company (Aetna) has approved the weekly IVIG for a period of 2 months, so there must be some validity to doing IVIG when it comes to treating these difficult to treat infections. Good luck with everything. My thoughts are with you.

[philamom]

Kimflow- I was basically given the same explanation as Orion. My dd had a couple IVIG's before lyme diagnosis and 3 while on lyme abx protocol. The herx was horrendous. We were doing them every 3-4 months. Between 1st and 2nd it was almost a year. Her immunologist suggested they should be every 8 weeks. I was hesitant since her post flair would last 2-3 months. Well, once we started every 8 weeks she no longer herxed as much. Her post symptoms now last about 2 weeks, maybe a little longer. She even tells me she loves me the night b4 the infusion because she realizes she'll be mean for a while

 

edit- wanted to mention that I give dd prednisone (15mg dissolvable tablet) on days of infusion. That seems to work for her.

Edited June 28, 2012 by philamom

[Orion]

edit- wanted to mention that I give dd prednisone (15mg dissolvable tablet) on days of infusion. That seems to work for her.

 

Just throwing out an idea, as I really don't have the answer. Since Lyme is involved, is it possible the "herx" reaction could be associated more with the prednisone as opposed to the IVIg itself?

[Kimflow]

Orion and philamom,

 

Things change here in a matter of 24 hours. Dr. L's officer calld today to say that he can have the IVIG. I faxed her the hard copy CD 57 of a 24 as well as his tonsil cultures yesterday. Maybe the huge reservoir of bacteria in his tonsils after months of antibiotics changed her mind.

 

Now I am worried about what to do about the iv steroids. I asked her about this and i suppose she has made her decision on teh new orders that she faxed to infusion company this morning but I have not seen them.

 

Once again, I have seen two schools of thought.....no steroids if lyme or as the Dad on here wrote.....one or two doses of steroids around IVIG would not be long enough to flare the lyme. The last thing I want is to refuse the steroids or cause Dr. L to drop steroids based on my questions and then have him suffer after IVIG.

 

Deep breaths.....after years of coping with trying to remediate autism, it has left me less able to stay even with all the ups and downs of pandas.lyme decisions but I am trying hard.

 

Thanks for your support.