Jump to content
ACN Latitudes Forums

Recommended Posts

Below are my ds10 IgeneX results. He has had PANDAS since he was about 5, but only dx in January of this year. His CamK was 150. After multiple antibiotics, T&A (July) and 2 IVIGs (May & Oct.), we would see initial improvement, but only to backslide every time. This led us to go see a llmd. He tested positive for Lyme through IGeneX and positive for bartonella through Specialty Labs. My son's new pediatrician is not in agreement with the llmd that we used and is questioning the test results.

 

IGM - 31+, 34+, 41+, 58+

IGG - 39 IND, 41+, 58+

 

Are these results of the IgeneX test questionable for Lyme? I would appreciate any advice and/or opinions.

 

Thanks,

Jodie

Link to post
Share on other sites

They are not questionable. On what basis is your pediatrician questioning this? So glad you finally got some answers. Bartonella can look like PANDAS. With Lyme and bartonella meds u should see real progress! Also it isn't easy to get a positive bartonella test. My son was repeatedly negative on that bartonella test but he responded to the bartonella treatment.

Edited by lyme mom
Link to post
Share on other sites

Hi JayJay,

 

I agree... these results are not questionable. I hope that you will go forward with the treatment recommended by the LLMD. This will after all be the ultimate test -- whether your son responds favorably to these abx protocols over time, and the improvement holds. It's good you know about the bartonella too. (lots of people here dealing with bart). Proper treatment will make all the difference in the world.

 

Also, in case you were not aware, the Cunningham test is not specific to strep/PANDAS (it's not specific to any infection). Dr. Cunningham has stated that lyme and other infections can raise the camK, and autoantibodies, just as strep does. She now has lots of lyme patients participating in her research.

[i know she would want you to report back to her about your son's positive lyme test so she can ammend his test file]

 

Best of luck... keep us posted!

Mary

Edited by PacificMama
Link to post
Share on other sites

Thank you guys for your reassurance. This is all so confusing and I am really tired of fighting with insurance companies and Dr.s. The Dr. questioned it saying that those were not the labs she would use and that if he really had lyme, the antibiotics he is on, would also not be what she would use. She said it would be a standard 28 day course of antibiotics (funny, she knows he's been on different antibiotics since Jan. for PANDAS. That's 11 months!)or if it was chronic or late stage, he would have a pic line and get IV antibiotics.

 

Anyway, we had already started him on zith and mino before we started to see her. It has been three weeks and he has had some MAJOR herxing. I take that as proof that we are on the right track. She is OK with him staying on the combo for now because they are not what she calls "poisonous doses" I'm hoping that she will join us on this journy, learn along with us, and watch my son get healthy. I get the feeling I should not hold my breath for her to do that!

 

I also let Dr. Cunningham know about his IGeneX and bartonella results.

 

Thank you again!

Link to post
Share on other sites

Jodie,

 

Welcome to the "lyme controversy" world! Plenty of variety of doctor's opinions out there!

 

Your pediatrician is an interesting case, where she does really seem to have some knowledge about treatment, and yet most that treat lyme would consider those pretty darn positive test results, some get diagnosed and aggressive treatment which much fewer bands (even some with just band 41!). Normally, from what I've heard and experienced regarding PANDAS and lyme, there are the doctors that get it and those that don't, and if they don't get it, it's much easier to just move on. She seems to be a bit in the middle, a type I haven't encountered or heard much about.

 

I have also responded to treatment for lyme and bartonella, despite negative results for bartonella and just 39IND and 41POS for lyme.

 

Regarding the IV, for cases of chronic lyme, which very well may be where your son is at this point, given a PANDAS diagnosis 5 years ago, the IV is more effective, particularly for neuro symptoms. Of course it is also more expensive and intrusive, and I imagine more difficult particularly on the kids. I know when I had my IV in, it took a while to learn to not move myself or pull or carry things in certain way without ruining the IV, and I am sure I am much less active than most kids. Given the herxing you are getting with orals, probably that is just the right thing for now, sounds like are getting somewhere, and IV at this point might be overkill and too much herxing. So, I would encourage you to be open to the idea of IV in the future, it might be needed, it might not.

 

Michael

Link to post
Share on other sites

jayjay,

what kind of herxing is your child experiencing? is this just since the abx for lyme?

 

what did Dr. Cunningham say about the Igenex results?

 

Within 48 hours of giving him the combo he was raging. He also had thoughts of self harm, anxiety, verbal tics that we had not heard in months. I can't believe we sent him to school through this (I did have to go get him a couple of days) but the school has been very understanding. At school he could be completely on task and in an instant would start yelling at the teachers and become very defiant. They almost seem like siezures. The episodes have lessened in frequency over the last week and he has actually had a couple of very good days. I am preparing myself for this to cycle but for now, I will enjoy the good moments.

 

Dr. Cunningham just thanked me for the info and said that it was very helpful for her research.

Link to post
Share on other sites

To give you some confidence/perspective on Herxing:

 

We too saw an immediate response to the Lyme protocol in our older PANDAS now Lyme son. Within 48 hours of he had flu like symptoms, he continued to add new stuff everyday with full blown TICs and some OCD moments days 10 to 14. We had a little reprieve and a resurgence of symptoms days 30 to 32. Then we had flu like symptoms with vomiting days 38 and 39. It took 9 weeks for him to achieve his previous baseline prior to starting protocol. We are now 3 months into treating Lyme and we have no OCD, no TICs with only physical complaints of joint, feet, shin pain.... headaches and just not feeling well at times. He continues to herx in a two week cycle so most likely there is a co-infection present.

 

With our 3 year old son who is confirmed positive for Bartonella and Babesia we also had a immediate response to new protocol. With in 48 hours we started witnessing rages again..... since then we've had additional rages plus complaints of joint pain. We are only on day 14 of treating for Babesia/Bartonella and he is currently on three antibiotics of Alinia, Azithromycin, Sulfamate. We do not anticipate a change in protocol for at least 4 months but will be updating as we move forward with treatment.

 

We also had unique herxing response with our 3 year old daughter but did not recently change protocol and keep her on the Alinia/Azith combo.

 

Wishing you all the best in getting your son well.

Edited by SF Mom
Link to post
Share on other sites

Yes, it was a two week cycle no change in protocol... TICs/OCD settled out and now have moved to more physical issues. I am watching for physical complaints and document those.

 

With younger son, I am documenting rages.... when those settle out, I suspect we'll get more complaints of physical symptoms.

 

Hope that makes sense.

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...