Panda's or Lymes? Help

[HopeinHIM]

Our Son (10) diagnosed with PANDAS/PANS thru lab work and symptoms by Dr T in NJ. Three months on anti b's and 50% better. WE went off to see Dr Bouboulis in Connecticut and he says Ds has Lyme's and is primary from what he feels. We Did Igenx test and waiting on results but starting three different anti B for Lyme's. No Lyme's came up on any of Dr T last 3 lab work tests!!!. I am confused!! I have been submerged in the PANDAS world for three months and hopeful that he would cure.... but now Lyme's??? and Dr B seems to think he has had it for awhile. Dr B was positive and seems to feel all personality , mental fog and such will clear with this Lyme's cocktail as he referred to it. Dr B says he may have strep too but it's the Lyme's that is causing most problems. Didn't really examine him just asked us questions. Oh no! does this mean permanent damage!?? He has been improving on Dr T protocol but not more than 50 to 60% plus low low low( 1.2 ML liquid) dose of Lithium have been added bc the only thing to stop the rages. He had tick bite four years ago. He fit a lot of the PANDAS symptoms. But Dr B says his feet ach and calves and brain fog with rages and mood swings lead him in this direction. I know I AM RAMBLING. SO PATHETIC! sorry. Thank you all for such great support and info and pardon my anxiety!

[SSS]

I can't write a lot, but I want to say 1 important thing:

 

Trust Dr. B.

 

You can have both PANS and Lyme disease. Underlying infections create PANDAS/PANS.

Edited July 9, 2014 by SSS

[ktdommer]

Hope- my story is opposite of yours. Lyme world for 3.5 years and now PANS for 6 years. Either way it feels like a double whammy to me. One condition alone would be plenty. So you have a lot to figure out. It is complicated combining Lyme and PANS. We will never know the trigger of PANS. Sounds like your son could have bartonella as a coinfection. I'm guessing the doc discussed this with you when talking about rages and sore soles of the feet.

Lyme disease does require 3 antibiotics to treat the three forms of the spirochete. It takes a very skilled doctor to treat Lyme. I've met many wonderful and knowledgeable parents on this forum. I tend to go to Lymenet.org to post more specific Lyme questions.

It has now been 4 years of Lyme treatment for my son who is 19. I'm still learning.

If I could change one thing it would have been to invest in a better ILADS doctor sooner. Also would have stayed on IV much longer than 9 months. My son has congenital Lyme so a different situation there.

You will learn more about the ridiculous reality of Lyme testing. I hope Igenex is helpful. My husband's results had a quick 3 week turn around time with them last month.

I would ask your doctor about testorone testing for your son. my nephew at age 8 runs way high out of range. My 19 year old is incredibly low. Just a piece of the puzzle.

Young kids like your son bounce back faster than those with congenital or chronic Lyme. Stay positive and know that he can beat both conditions.

Best wishes!

[LNN]

As SSS says, you can have both Pandas and Lyme. It's why the NIMH has coined the term PANS to include non-strep triggers. Based on your description - especially the rages, brain fog and the failure to achieve full remission under a single antibiotic therapy, I'd agree with the decision to pursue Lyme and see where it gets you. Testing for Lyme is horribly inaccurate but Igenex is among the best of options. The fact that previous Lyme tests were negative doesn't mean much.

 

I don't post on the forum much anymore, but your story was too close to home for me to not chime in. My son was dx'd with Pandas and treated by two of the top Pandas docs for 2.5 yrs. He underwent long-term abx, steroids, t&a (tonsillectomy), plasmapheresis and IVIG. He could never sustain more than 2 months of improvement before things tanked over and over again - for 2.5 yrs - from age 6-8. His Quest western blot for Lyme was negative. I felt so hopeless. Finally at the urging of my BFF, we tested thru Igenex and my son had 5 bands show up. We started with an LLMD who put my son on 3 abx - azithromycin, augmentin and bactrim (because LLMD suspected bartonella due to rages). Within 3 weeks, I knew we were on the right track. It still took 2.5 yrs to get to full healing. But he got there!

 

My son is now 11 and has been off all medications for 15 months. He is in the best place of his life. He remains susceptible to Pandas flares if he gets sick but the episode passes quickly now that we have a dr. who will prescribe abx at the first signs of symptoms. Hoping this fades as he gets to the other side of puberty. He remains sensitive to mold and will develop tics and brain fog if there's a mold issue. But these too resolve once we find the source. So is he "cured"? No. Is he in full remission and a totally happy, healthy kid? Absolutely. This week he's spending 4 hrs/day in the 90 degree heat doing a crossfit camp - lifting weights, rope climbing, running, squats...and loving it. The camp is run by last year's math teacher and today, the teacher told me "your son blows me away! He is so focused and confident and determined. He's come so far - I'm just amazed." This is a kid who was consumed by anxiety, OCD and brain fog a few years ago, a kid who missed more than 20 days of school because he couldn't get off the couch due to muscle pain.

 

A long and very winding road to recovery? Yes! Permanent damage? Absolutely not. Give the lyme protocol some time and see where it gets you. The proof is in the pudding, not in a lab test.

[rowingmom]

We never did travel down the PANDAS (strep) path, even though DD's first major exacerbation was caused by a strep infection.

 

When we discovered that along with a couple of positive lyme-specific Igenex WB bands, DD was highly positive for bartonella (one of the lyme coinfections that can be a stand-alone infection as well), our LLMD told us that when we had successfully treated bartonella her PANS symptoms would resolve.

 

They have. Like LLM said, a long road to recovery, but DD has no permanent damage, and has recovered from her diagnoses of Tourette's, Aspergers and motor delay. Her recovery has been beyond my expectations.

[pr40]

I think that previous posts overlooked that IGENX test came negative. Could you all comment on that?

At any rate, in your place I would continue dr b's abx for a while, like six months, to see if there are any changes in symptoms. Current diagnostic tests are not great and they do not definitively prove anything. absence of symptoms or lessening does.

good luck

[SSS]

It did not say Igenex came back negative. Waiting on Igenex testing that Dr. B had the knowledge and experience to order. AND once Igenex test is back, it must be looked at closely to see which bands are reactive.

 

To OP: please make sure you have your own copies of EVERY test that has been run by Dr. T's office-

we all need to make sure we have copies, and look them over, too.

[rowingmom]

DD's Igenex WB for lyme was negative - she had 2 weakly reactive (IND) lyme-specific bands. Everything else was negative except for kDa 41 which is not lyme-specific.

 

When we retested after 2 years of abx treatment more lyme-specific WB bands were reactive. Perhaps an indication that DD's immune system was functioning properly.

 

Coinfection testing needs to be done.

[HopeinHIM]

Hope- my story is opposite of yours. Lyme world for 3.5 years and now PANS for 6 years. Either way it feels like a double whammy to me. One condition alone would be plenty. So you have a lot to figure out. It is complicated combining Lyme and PANS. We will never know the trigger of PANS. Sounds like your son could have bartonella as a coinfection. I'm guessing the doc discussed this with you when talking about rages and sore soles of the feet.

Lyme disease does require 3 antibiotics to treat the three forms of the spirochete. It takes a very skilled doctor to treat Lyme. I've met many wonderful and knowledgeable parents on this forum. I tend to go to Lymenet.org to post more specific Lyme questions.

It has now been 4 years of Lyme treatment for my son who is 19. I'm still learning.

If I could change one thing it would have been to invest in a better ILADS doctor sooner. Also would have stayed on IV much longer than 9 months. My son has congenital Lyme so a different situation there.

You will learn more about the ridiculous reality of Lyme testing. I hope Igenex is helpful. My husband's results had a quick 3 week turn around time with them last month.

I would ask your doctor about testorone testing for your son. my nephew at age 8 runs way high out of range. My 19 year old is incredibly low. Just a piece of the puzzle.

Young kids like your son bounce back faster than those with congenital or chronic Lyme. Stay positive and know that he can beat both conditions.

Best wishes!

Thanks so much! Testosterone??? First I heard but definitely will check bc my Ds is so hyper sexual suddenly we are beside ourselves. I am just concerned about his gut and all these anti B's.

much thanks!'

[HopeinHIM]

As SSS says, you can have both Pandas and Lyme. It's why the NIMH has coined the term PANS to include non-strep triggers. Based on your description - especially the rages, brain fog and the failure to achieve full remission under a single antibiotic therapy, I'd agree with the decision to pursue Lyme and see where it gets you. Testing for Lyme is horribly inaccurate but Igenex is among the best of options. The fact that previous Lyme tests were negative doesn't mean much.

 

I don't post on the forum much anymore, but your story was too close to home for me to not chime in. My son was dx'd with Pandas and treated by two of the top Pandas docs for 2.5 yrs. He underwent long-term abx, steroids, t&a (tonsillectomy), plasmapheresis and IVIG. He could never sustain more than 2 months of improvement before things tanked over and over again - for 2.5 yrs - from age 6-8. His Quest western blot for Lyme was negative. I felt so hopeless. Finally at the urging of my BFF, we tested thru Igenex and my son had 5 bands show up. We started with an LLMD who put my son on 3 abx - azithromycin, augmentin and bactrim (because LLMD suspected bartonella due to rages). Within 3 weeks, I knew we were on the right track. It still took 2.5 yrs to get to full healing. But he got there!

 

My son is now 11 and has been off all medications for 15 months. He is in the best place of his life. He remains susceptible to Pandas flares if he gets sick but the episode passes quickly now that we have a dr. who will prescribe abx at the first signs of symptoms. Hoping this fades as he gets to the other side of puberty. He remains sensitive to mold and will develop tics and brain fog if there's a mold issue. But these too resolve once we find the source. So is he "cured"? No. Is he in full remission and a totally happy, healthy kid? Absolutely. This week he's spending 4 hrs/day in the 90 degree heat doing a crossfit camp - lifting weights, rope climbing, running, squats...and loving it. The camp is run by last year's math teacher and today, the teacher told me "your son blows me away! He is so focused and confident and determined. He's come so far - I'm just amazed." This is a kid who was consumed by anxiety, OCD and brain fog a few years ago, a kid who missed more than 20 days of school because he couldn't get off the couch due to muscle pain.

 

A long and very winding road to recovery? Yes! Permanent damage? Absolutely not. Give the lyme protocol some time and see where it gets you. The proof is in the pudding, not in a lab test.

Thanks so much for taking the time to answer me!! Soooo its NOT just one month of three anti biotics? He get's so emotional on anti biotics after awhile I am not looking forward to years of this. When people say they are in treatment they mean anti b or something else? I was so encourages to here about your son. What about homeopathic? No real good LLMD here in NJ that I have heard of yet without controversy. I will store this story in my mind for future encouragement. Something tells me I am going to need it.

[HopeinHIM]

I think that previous posts overlooked that IGENX test came negative. Could you all comment on that?

At any rate, in your place I would continue dr b's abx for a while, like six months, to see if there are any changes in symptoms. Current diagnostic tests are not great and they do not definitively prove anything. absence of symptoms or lessening does.

good luck

Hi, Sorry for any confusion. Still waiting on Igenx ordered by Dr B. I was surprised that in all the blood work I had from Dr T previosly (who I love also) Lyme's all came back neg. Why does he NOT use Igenx also if it's the only accurate one out there? Anyway....Dr B started us on the trio Lymes protocol before Igenx results are even back. I will get copies of all. Great advice! Thanks again!

[Hrosenkrantz]

HopeinHIM -- just wanted to say I feel your pain. It sounds like you have not been stuck in this world as long as some of us have. I have been to Dr B and many other PANS doctors (if there is a PANS -- or NON-PANS doctor for that matter! -- out there, my son has seen them!)

 

One thing you may find is that you can talk to five different doctors, and you will get five different explanations as to why your kid is not better. Each has their own protocol and favorite medicine. A medicine one doctor loves, another hates. It can be very overwhelming and stressful -- how do you know which path to take, which is right for your kid?

Further complicating the matter is that you will find families out there who got better by picking the dr B route, or the Dr T route, or multiple other routes -- and isn't that all we desperately want -- to make our kids better?

 

I'm sorry this ramble isn't giving you the guidance you want -- I wish I could write you a message and tell you to pick a certain doctors path. Ultimately you are going to have to try different things, go with your gut (a phrase i hate), and observe what works and doesn't work with your kid.

GL

[LNN]

Thanks so much for taking the time to answer me!! Soooo its NOT just one month of three anti biotics? He get's so emotional on anti biotics after awhile I am not looking forward to years of this. When people say they are in treatment they mean anti b or something else? I was so encourages to here about your son. What about homeopathic? No real good LLMD here in NJ that I have heard of yet without controversy. I will store this story in my mind for future encouragement. Something tells me I am going to need it.

 

For us, it was many, many months of combo abx. Once it's been there for awhile, one month is not enough. For us, treatment was more than just abx. It included nutritional supplements, removing some minor mold issues and some other things. Some have been helped by homeopathy but it didn't help my son. Our LLMD is about an hour east of Dr B. But as others have said - there is no "right" doctor. They all have their pros and cons. It's a matter of finding the "right" doctor for you.

 

You mention your son getting "emotional" on antibiotics. You may want to search the forum archives for "detox" and "herx" - and google "herxheimer response" - a "worse before you get better" response very common in lyme treatments. Also be sure to add 30-50 billion CFUs of probiotics, taken at least 2 hrs away from antibiotics, to replenish the gut bacteria that gets killed by antibiotics.