My dd has been diagnosed with Lyme too

[momaine]

I posted this on the pandas/pitand forum but wanted to post it here too for those who might miss it over there.

 

I had wanted to wait until all my dd's labs were back but I'm tired of waiting and so I'll update again when those come in. Despite negative Igenex testing (but one positive and a couple IND on some lyme specific bands)Dr. J felt that their was significant evidence based on symptoms and exposure that my dd has lyme and bartonella. He ordered a host of tests to try to corroborate that and the results are not yet back.

 

Before we began lyme treatement, my dd was back sliding after 4 HD IVIG. (she had HUGE improvement after the first one, more improvement after second one, and third and fourth, not so much) Every time we tried to take her off Augmentin, she would get worse in about two weeks time.

 

Since beginning Lyme/co-infection treatment (added Minocyline and Tindamax to her Augmentin and Azith) she has begun improving again, fairly significantly. One week after beginning treatment, she broke out in a lyme rash that only lasted about ten minutes. Dr. J's office said it was from die off. We got photos of it and sent it to his office. Her symtpoms definitely wax and wane based on when she takes the Tindamax during the week. (two consecutive days per week) but the trend is very positive and I am so pleased.

 

Dr. J felt that it was likely that the lyme came first and wreaked havoc on her immune system and the PADNAS came as a result of the lyme not being treated. The same year that dd symptoms began her pony became so lame that we eventually had him euthanized. (vet did not test for lyme despite my suggestion) and since then our other two horses and our dog have had lyme disease, so it is not a far stretch to think that we too are infected.

 

Dd has had multiple negative Lyme Western blots but we did not test until she had had symptoms for several years. She is also one of those kids who does not make enough antibodies to fight off strep.

 

Anyway, the plan at this point is to continue with lyme treatment and IVIG and see how it goes. Both of her dr's believe the treatments are complimentary.

 

So glad I spent the money to see Dr. J. It was some of the best money I've ever spent. It feels so good to have someone on board who has seen it all. Love both of our docs! Really believe they are doing their best to get my dd back to 100%.

[mommakath]

That's my story too!!

[Suzan]

I'm so glad you are on a new path that will help your dd!!

[sf_mom]

Again, so happy for you!!!!!

 

I just wanted to mention one thing. Since you saw diminishing return with the hdIVIGs do not be afraid to suspend treatments for at least six months to see if advances can be made without continued back to back treatments. As you know, hdIVIGs have not been typically indicated for Lyme treatment in the past. AND, I think the question still remains which came first PANDAS or underlying Lyme and the immune system toppling with additional infections/vaccinations/viruses. AND, the reports are mixed as to the effectiveness of hdIVIG with some children actually getting worse. My concern with the repeat treatments is things really get stirred up and the body has no time to recover on its own.

 

Anyway, remain open to change and really consider if its helping or not. For those of us that have quite them we are seeing continued gains and strides toward recovery. Many of us are over one year post any treatments. If I thought they could speed up the recovery process I'd say go for it but I'm just not sure they are a short cut to the average two year recovery time with Lyme. I believe Dr. Jones has discussed its success and its about 1/3 helped, 1/3 not helped, 1/3 extended herx or stirring up of symptoms.

 

We are not proceeding with IVIG treatments for our younger twins and they both have extremely low IgGs 1 & 3s (lower than anyone has reported on the forum) and deficiencies in 13 of 14 strep pneumo titers. Our LLMD does believe these immune disfunction will resolve with treatment. We are retesting the IgG subclasses in the next three weeks and will report if things are actually improving like promised.

 

I know my comments regarding this issue always causes further worry but my only hope is that you'll use your instincts as a parent to its effectiveness. AND, make appropriate choices for your child based on that intuition and sometimes that means breaking recommended protocol. I too remain open to its use and will definitely reconsider our choice if progress stalls.

 

-Wendy

Edited February 20, 2011 by SF Mom

[momaine]

  On 2/20/2011 at 2:49 PM, SF Mom said:

Again, so happy for you!!!!!

 

I just wanted to mention one thing. Since you saw diminishing return with the hdIVIGs do not be afraid to suspend treatments for at least six months to see if advances can be made without continued back to back treatments. As you know, hdIVIGs have not been typically indicated for Lyme treatment in the past. AND, I think the question still remains which came first PANDAS or underlying Lyme and the immune system toppling with additional infections/vaccinations/viruses. AND, the reports are mixed as to the effectiveness of hdIVIG with some children actually getting worse. My concern with the repeat treatments is things really get stirred up and the body has no time to recover on its own.

 

Anyway, remain open to change and really consider if its helping or not. For those of us that have quite them we are seeing continued gains and strides toward recovery. Many of us are over one year post any treatments. If I thought they could speed up the recovery process I'd say go for it but I'm just not sure they are a short cut to the average two year recovery time with Lyme. I believe Dr. Jones has discussed its success and its about 1/3 helped, 1/3 not helped, 1/3 extended herx or stirring up of symptoms.

 

We are not proceeding with IVIG treatments for our younger twins and they both have extremely low IgGs 1 & 3s (lower than anyone has reported on the forum) and deficiencies in 13 of 14 strep pneumo titers. Our LLMD does believe these immune disfunction will resolve with treatment. We are retesting the IgG subclasses in the next three weeks and will report if things are actually improving like promised.

 

I know my comments regarding this issue always causes further worry but my only hope is that you'll use your instincts as a parent to its effectiveness. AND, make appropriate choices for your child based on that intuition and sometimes that means breaking recommended protocol. I too remain open to its use and will definitely reconsider our choice if progress stalls.

 

-Wendy

Wendy,

I appreciate your comments. I like to consider everything. I will certainly keep an open mind and I'm not afraid to go against any doctor's recommmendations. Been there, done that, many times over with various doctors. I do what they suggest until it isn't working anymore then I rethink things and change what needs to be changed, preferably with their help. She had such a benefit with the first two HDIVIG and I'm hoping that now that she is being treated for Lyme that it will again benefit her like the first two times. I realize its a gamble. I just hope it doesn't make things worse. None of them made her worse so far, but the last two didn't seem to help either. (well, it didn't last anyway)

 

Again, thanks for sharing and I'll be sure to update the forum when I know how it affects her.

 

I have read somewhere on the net, that ivig is now sometimes suggested in lyme treatment. Just can't remember where, off the top of my head.

[sf_mom]

IVIG is used for LD patients that have neuropathy symptoms. It is the back to back 'hd' IVIGs that have no proven track record other than with Dr. B (at least, I am not aware of any other LLMD doing them) and as you know longer term effectiveness is still questionable. Since you did not have a negative response previously..... I do not believe you'd have a problem with future treatments. BUT, some have had horrible experiences or only temporary relief and I'd love to know why its occurring. One issue we've had on this particular forum is treating for PANDAS when it may have truly been LD all along. Perhaps the antibiotics were not correct or enough to treat chronic infection and to see continued improvement with PANDAS treatments. Others who had a horrible time right out of the gate after hdIVIG treatment... might have been experiencing a huge extended herx's that only resolved with time? Its a little bit of a mystery.

 

One example:

 

My girlfriend son had 3 hdIVIG and sure enough at the 8 week mark it would be begin to fail. By the time they would get to week 12 she would be begging Dr. K for another hdIVIG treatment. AND, unfortunately his baseline was adjusting down ward not up ward with each treatment. It was not until he started on comb'd antibiotics for Lyme that his recovery took off. This is just one of the stories that I am familiar with off forum.

 

Anyway, there are more than a handful of us that choose to stop IVIG treatments all together and advances are being made well beyond prior PANDAS baselines the further out we are from treatments. I mention this in case you are ever confronted with a tough decision of suspending treatments or are confused if advances are not being made like hoped for with PANDAS/Lyme treatments. BUT, if its helping FANTASTIC. Its a bummer but it is truly is trail and error at this point and none of use know the answers yet.

 

-Wendy

Edited February 21, 2011 by SF Mom

[momofgirls]

Wendy, the information you posted about ivig and lyme is what i have learned as well...indicated for neuropathy and i think usually at a low dose. Neuropathy is not an autoimmune disease, obviously, so i think the low dose is said to have some immune boosting effect as well as anti-inflammatory properties. However I wonder sometimes about the high dose ivig being used for lyme induced tics and ocd. Just something I have been thinking about recently but in theory PANDAS children receive high dose ivig to suppress the autoimmune response to an infection (possibly post infection). If chronic lyme and others are still smoldering, then I would think that using repeated high dose ivig's would be contraindicted as are steroids which also suppress the immune system. I do believe our children have an immune dysfunction in response to the lyme but treating it as an autoimmune disease before erradicating infection might do more long term harm than good. This is just total speculation and I understand parents are all seeing different results to ivig with and without lyme. I wish we knew why the results are so varying among all the kids. It is a mystery.

[Fixit]

  On 2/22/2011 at 3:49 AM, momofgirls said:

Wendy, the information you posted about ivig and lyme is what i have learned as well...indicated for neuropathy and i think usually at a low dose. Neuropathy is not an autoimmune disease, obviously, so i think the low dose is said to have some immune boosting effect as well as anti-inflammatory properties. However I wonder sometimes about the high dose ivig being used for lyme induced tics and ocd. Just something I have been thinking about recently but in theory PANDAS children receive high dose ivig to suppress the autoimmune response to an infection (possibly post infection). If chronic lyme and others are still smoldering, then I would think that using repeated high dose ivig's would be contraindicted as are steroids which also suppress the immune system. I do believe our children have an immune dysfunction in response to the lyme but treating it as an autoimmune disease before erradicating infection might do more long term harm than good. This is just total speculation and I understand parents are all seeing different results to ivig with and without lyme. I wish we knew why the results are so varying among all the kids. It is a mystery.

 

So are you thinking that if chronic infection...not autoimmune response is the culprit...that ld ivig would be in order..

or that no ivig at all is good...

i know you are theorizing

[KeithandElizabeth]

I have analyzed this topic endlessly when I decided to stop IVIG's on our son and to not do one at all on our 12 year old daughter.

 

After speaking with many doctors and reading through many blogs of parents with children with lyme and of adults with lyme, my current thoughts are that only small dose IVIG is warranted ONLY if there is true neuropathy issues. After doing 6 IVIG's on our son and watching how long it is taking him to completely rid his body of the coinfections, I wonder if the high dose IVIG's did not suppress his immune system. Our daughter, who never had an IVIG, responded much quicker to lyme treatment than our son. High Dose IVIG is for autoimmune issues, hence it is immune suppressing. So, you may see a short term gain, but I think that in the long term, the body may have a more difficult time in fighting the infections.

 

In terms of doing the low dose IVIG's continually, I have had one doctor (who has 5 IVIG rooms in his office) say that he feels the body can become too dependent on the IVIG's and not fight on its own as much. So, my thoughts were to have my children try to fight the lyme and coinfections on their own and not taint the situation with the IVIG's. Granted, this was after doing many IVIG's. LOL

 

Anyway, this is a topic that I think of often!

 

Elizabeth