Results of Appt and Tests

[cfamily]

I will RAMBLE so please pardon me!

 

We saw DR. B in stevensville, md and he indicated that there was strong evidence of lyme on top of PANDAS. (CD57, Band implications). So we have been busy with the super abx protocol along with alinia, fluconozole, probiotics, vit d, omegas, and a gluten, dairy, sugar, yeast free diet.

 

I would say that we are dealing with mainly OCD now, intrusive thoughts about getting sick at school, rage if we discipline or try to correct, and the bad night time habits that require someone to help her fall asleep. We are homebound with a 504 in PA and have had a couple scattered interactions with friends from the neighborhood at the park.

 

We still see the pshychologist 2 times a week and just today our PA in Edison called to say that our DD10's Camkinase part 2 results are in......

 

Her first score was 181 which cunningham felt was in the high range for pandas

 

Her other scores were capped out 1600 and the last which my HUSBAND did not write down was at the top of the range.

 

I have read that lyme can elevate the cam kinase does any one know of reading I can do?

 

Our PA is really pushing for the IVIG because of the high scores, but I feel like we are just starting our lyme journey and need to address parasites, inflammatory diet, and the co infections.

 

Any input would be greatly appreciated.

 

Be it small, I have noticed improvements with the high dose abx, parasite, diet protocol. What do you guys think.

 

Sorry for not posting often, but I so appreciate the input from the group.

 

Best,

Sharon in Philly

[LNN]

My son had CamK of 183 and we spent 2 years on the Pandas route (IVIG and pex). My daughter just came back with CamK 178 and sky high anti-lyso. We are only pursuing lyme/bartonella for her. IVIG is not even a consideration at this point. By the numbers, she is Pandas more than lyme. The way I look at it is that IVIG alone will not address the lyme. But it's entirely possible that the lyme protocol alone will address both lyme and Pandas and make IVIG unnecessary. In the order of things, it seems to make more sense to treat tick-borne stuff first then see what, if anything, is left.

 

Lyme can elevate CamK and trigger auto-immunity. Here's an article by Dr Cunningham et al that discusses. It addresses carditis, not Pandas, but I can't see how it wouldn't also be true for Pandas.

http://jcm.asm.org/cgi/content/full/43/2/850

[NancyD]

I agree 100% with Laura. I don't regret having done IVIg because it gave us a year in remission, however, now knowing what I know I would try and clear the Lyme (and any other co-infections) first with abx, supplements, and detox before trying IVIg.

[sf_mom]

Us too... Older DS was treated with 3 hdIVIGs and we had a positive result from the PANDAS treatment but always broke from antibiotic protocol with hd antibiotics and combo'd antibiotics. It is unclear to us if it was the IVIGs that helped or the antibiotic protocol we followed that helped.

 

Once starting Lyme protocol we realized truly how sick our older son still was due to the Herxheimer response and drawing out the lyme. We've seen herx responses that caused every single TIC to return and plus some new ones develop and these herx's have lasted weeks.

 

Our younger twins are also confirmed congenital Lyme along with Babesia/Bartonella.... CAM of 148 and 159. We have chosen to not treat them with hdIVIG at this time as our LLMD feels treating the Lyme will solve the hyper immune response similar to PANDAS symptoms. hdIVIG has not been indicated for LD in the past. ldIVIG is typically used for individuals with LD that have neuropathy symptoms and typically towards the end of treatment.

 

My best recommendation when confronted with this tough decision is to give the Lyme treatments time to work. There is no easy fix and it takes a long time to turn down the hyper immune response..... for the average child two years. Perhaps in a year you'll have a clearer understanding if its required and bacteria load will be down hopefully capitalizing on the effectiveness of treatments.

 

-Wendy

Edited March 1, 2011 by SF Mom

[norcalmom]

Great article. Thanks for posting. I just skimmed thought it, and I'm a little confused about the cross reactivity to Strep, and why she injected strep into the mice in addition to the burgdoferi.

 

Does this indicate that igg and igm for b.burgdorferi maybe elevated in auto-immunity prone induviduals, when it is actually strep causing the elevation (and vice versa?)

[sf_mom]

It is known that strep and bb bind to same Factor H protein in the body to evade complement attack. Maybe the cause for the strep trigger. Both Madeleine and Dr. H are aware of the binding.

 

http://www.jimmunol.org/content/169/7/3847.full

[jayjay]

Just wanted to post because my son is doing IVIG and Lyme treatment. He has had four IVIG treatments. IVIG #2 was done a week before he started Lyme treatment in October of last year. Then he had one in December and one this February.

 

The reason I looked into Lyme was that he could not sustain a remission with antibiotics nor with the first IVIG we had last May. He tested positive on IgeneX, IGM #31, 34, 41, & 58, and IGG #41. #39 was IND. He also tested positive for bartonella.

 

I have to say I was very scared to do both, but decided to follow the advice of both his immunologist and LLMD. He seems to be tolerating both treatments well. He had some trouble with vocal tics when we tried to add amox. to the azith. and mino in January, but have seen so much progress in the last few months. We had a meeting with his teachers last week and everyone was amazed by the change in him. One even wrote to me and said that it was great to have the “real” him back.

 

Could it be just the Lyme treatment? Maybe. Could it be just the IVIG? Maybe. Could it be the combo? Maybe. That is the problem when you do more than one treatment at the same time, you can’t be sure. Every child and every infection is different. Right now, the combo seems to be working for him.

[sf_mom]

So excited that treatments are working for your son!!!!!! This is a fantastic update.

 

-Wendy

[Fixit]

 

I have to say I was very scared to do both, but decided to follow the advice of both his immunologist and LLMD. He seems to be tolerating both treatments well. He had some trouble with vocal tics when we tried to add amox. to the azith. and mino in January, but have seen so much progress in the last few months. We had a meeting with his teachers last week and everyone was amazed by the change in him. One even wrote to me and said that it was great to have the “real” him back.

 

 

i am so glad the combo is working...this thing is so confusing in which direction to go to as there is not one size fits all...or even something similar fits most

 

can you explain..trouble with vocals....did they go away...

and i guess you stayed the course with all the abx

 

and do you have a percentage of improvement....are you close to 80%?

 

thanks and thanks for sharing your story

[jayjay]

I almost thought twice about posting because of the "jinx" factor But there has not been much posted about treating Lyme & PANDAS together.

 

When we added amox. in January within 24 hrs the vocal tics were crazy. Vocal tics were never a huge symptom for him so we were kind of shocked to see them come on with such force. He did a LOUD cork popping sound, a high pitched screech and would yell Fire! Fire! We tried to ride it out thinking if it was a herx and would soon go away. A month later (it was driving us all crazy) I called the Dr. he said to stop the amox. for 48 hrs. and see what happens. They completly dissappeared! The Dr. said to keep him off of the amox. for now.

 

I would say that he is very close to 80%. Maybe even more. He has been sick for so long it is hard to know what normal is for him. He still has some OCD and anxiety, but very managable. The LLMD told us those issues are usually the last to go.