Speaking of lyme.....

[PANDASmcnuggetsw/fry/coke]

If your child tests positive for lymes, are you still concerned about PANDAS? Or does the lyme explain what was going on in the first place with your child? If the symptoms can be so similar, how does one know if there is PANDAS in addition to lymes or just lymes?

 

Sorry of this is a lame question, but I was thinking about this alot today!:-)

 

PANDAS McNuggets w/fry/coke

[kimballot]

If your child tests positive for lymes, are you still concerned about PANDAS? Or does the lyme explain what was going on in the first place with your child? If the symptoms can be so similar, how does one know if there is PANDAS in addition to lymes or just lymes?

 

Sorry of this is a lame question, but I was thinking about this alot today!:-)

 

PANDAS McNuggets w/fry/coke

Ok... ok... you are not helping me to get out of my lyme obsession...!!!

 

I am wondering the same thing. I am thinking kids can have both PANDAS and lyme. I am wondering if you have any type of smoldering infection, if your immune system will get thrown out of wack... enough that if any infection on top of the underlying smoldering infection will result in inflammation and a breach in the blood brain barrier... So perhaps many (not all) of our kids have underlying lyme... perhaps some have underlying sinusits... perhaps some have underlying chronic strep. (and perhaps some have all of these due to lousy immune systems!)

[laurenjohnsonsmom]

Kimballot,

 

I couldn't agree more. Infectious disease causing autoimmune disorder. Rather it be Lyme causing MS or Lyme causing BBB (PANDAS). It all makes sense to me...

[justinekno]

I don't think it's a lame question. I think that is one of the million dollar questions. Our dr believes that Lyme started the process of my son's immune issues and that left him open to problems with strep, hence PANDAS. I am not 100% convinced that we are dealing with PANDAS because our strep history is a little iffy. I can't get a clear answer from anyone if Lyme can produce the same test results (cunningham, immune bloodwork) as PANDAS. If Lyme can mimic PANDAS in symptoms, can it mimic PANDAS in bloodwork?

 

[quote name=PANDASmcnuggetsw/fry/coke' date='13 August 2010 - 11:43 PM'

 

timestamp='1281757396' post='79705]

If your child tests positive for lymes, are you still concerned about PANDAS? Or does the lyme explain what was going on in the first place with your child? If the symptoms can be so similar, how does one know if there is PANDAS in addition to lymes or just lymes?

 

Sorry of this is a lame question, but I was thinking about this alot today!:-)

 

PANDAS McNuggets w/fry/coke

Edited August 14, 2010 by justinekno

[thereishope]

Hasn't been said for awhile that Lyme would fall into the PITAND catagory, same as PANDAS. So, ultimately if your child is PANDAS, Lyme, etc....we all fall under the same bigger umbrella.

Edited August 14, 2010 by Vickie

[sf_mom]

With our more recent visit to an LLMD....... He spoke about the HYPER immune response in an individual causing the inability to deal with additional bacteria, parasites, viruses, allergies, molds, etc. With that said not all bacteria's are created equal and some are more toxic and difficult to eradicate. The few he mentioned were: mycoplasma (100s of strains, difficult to test for and can take months to eradicate) LYME (some bands more than others), co-infections to LYME, specifically Bartonella. He did mention strep and staph but I can't remember the context. However, he was very specific to say that once the bacteria is gone, the HYPER immune response stops and the individual recovers and should no longer have a problem fighting bacteria, parasites, viruses, allergies, molds.

 

My hope in the near future is there will be a more extensive diagnostic list of tests helping everyone target the appropriate bacteria for the most effective treatment. As you know, we were very aggressive and immediately jumped into hdIVIG treatments that were helpful but I am not completely sure they would have been the complete answer for our particular situation. We are seeing true resolution to all symptoms and again will speak with more confidence when we are 6 months at 100%. I will also add that we hope to take our son off antibiotics entirely within the next year or two depending on our confidence, our twins recovery and our older son's progress. "I RESERVE THE RIGHT TO CHANGE MY MIND" as a family we have all learned so much over the year!!!

 

I also wanted to mention he prescribed an antibiotic ointment to put in my son's nose twice daily to prevent future exposures or eradicate any residual stuff up there.

 

-Wendy

Edited August 14, 2010 by SF Mom

[KeithandElizabeth]

I have also learned from Pmom's visit to Cunninham's office that lyme can product high Cam Kinase. And elevated immune complexes are quite common with lyme disease. So, I believe that yes, lyme and/or PANDAS can look the same in terms of blood work. But I believe the lyme is just one of the microbes causing PITANDS.

 

elizabeth

[justinekno]

Yes, Dr. Cunningham confirmed the same thing to me when I emailed her recently. Although she said it was possible that there is hidden strep in these kids and the tests are just not showing it. Maybe that's a bit of a disclaimer because she/everyone is still learning about PANDAS/PITANDS. Dr. B. agreed that elevated immune complexes can be caused by Lyme. I think what occurs next is what is confusing to me. Is it just Lyme or other things too? Maybe it doesn't matter because they are treated the same way? Although I wonder if you have Lyme (just Lyme only) would IVIG work? I haven't looked into that.

 

I have also learned from Pmom's visit to Cunninham's office that lyme can product high Cam Kinase. And elevated immune complexes are quite common with lyme disease. So, I believe that yes, lyme and/or PANDAS can look the same in terms of blood work. But I believe the lyme is just one of the microbes causing PITANDS.

 

elizabeth

Edited August 14, 2010 by justinekno

[sf_mom]

The answer is NO. It is the correct antibiotic regimen inclusive of cyst busters/Mepron that will resolve chronic LYME/co-infection. BUT, sometimes the hdIVIG can be helpful in supporting the child through recovery and help them to contend with additional bacterias when fighting LYME/co-infections. BUT, you must also be aware that IVIG can create a huge herx for the child if LYME is involved and would recommend caution with too many treatments.

 

Bewell is a perfect example of a child who had 16 IVIG treatments both hd and ld and not recovered only to discover LD.

 

Although I wonder if you have Lyme (just Lyme only) would IVIG work? I haven't looked into that.

Edited August 14, 2010 by SF Mom

[justinekno]

Do you have anything to show that IVIG would not work with Lyme? It was my gut feeling but I can't seem to find anything saying so.

 

The answer is NO. It is the correct antibiotic regimen inclusive of cyst busters/Mepron that will resolve chronic LYME/co-infection. BUT, sometimes the hdIVIG can be helpful in supporting the child through recovery and help them to contend with additional bacterias when fighting LYME/co-infections. BUT, you must also be aware that IVIG can create a huge herx for the child if LYME is involved and would recommend caution with too many treatments.

 

Bewell is a perfect example of a child who had 16 IVIG treatments both hd and ld and not recovered only to discover LD.

 

[sf_mom]

I 'think' its because of the multiple antibiotics used to attack both the inner/outer structure of the cell wall..... plus they are used at much higher doses than PANDAS treatment. Then adding cyst busters/Mepron to eradicate absolutely everything that is in its cyst form or hiding out in hard to reach places like the liver.

 

I am also stating my opinion based on more than a handful of families/children that have gone down the PANDAS route with hdIVIG and were failing treatment only do well once the LYME Protocol was implemented. My girlfriend's son is prime example 3 hdIVIGs (regressing typically at 8 weeks) and now 7 weeks into LYME treatment and 11 weeks post his last hdIVIG and he is finally in the 90% range. THESE ARE ALL CHILDREN finding out after hdIVIG that they have LYME.

 

If I were in your position. I'd find the BEST LLMD in your area and treat for LYME aggressively.... and see what they say about hdIVIG. I am positive they are not opposed to the concept and might even help once the major HERXING is out of the way.

 

I know that Dr. K has made the recommendation to another family to treat the LYME first then eventually pursue hdIVIG for PANDAS if needed.

 

-Wendy

[justinekno]

I agree that a LLMD is warranted. I am re-reading Cure Unknown again, now that we are living it. I just wish these dr's weren't so hard to find.

 

I 'think' its because of the multiple antibiotics used to attack both the inner/outer structure of the cell wall..... plus they are used at much higher doses than PANDAS treatment. Then adding cyst busters/Mepron to eradicate absolutely everything that is in its cyst form or hiding out in hard to reach places like the liver.

 

I am also stating my opinion based on more than a handful of families/children that have gone down the PANDAS route with hdIVIG and were failing treatment only do well once the LYME Protocol was implemented. My girlfriend's son is prime example 3 hdIVIGs (regressing typically at 8 weeks) and now 7 weeks into LYME treatment and 11 weeks post his last hdIVIG and he is finally in the 90% range. THESE ARE ALL CHILDREN finding out after hdIVIG that they have LYME.

 

If I were in your position. I'd find the BEST LLMD in your area and treat for LYME aggressively.... and see what they say about hdIVIG. I am positive they are not opposed to the concept and might even help once the major HERXING is out of the way.

 

I know that Dr. K has made the recommendation to another family to treat the LYME first then eventually pursue hdIVIG for PANDAS if needed.

 

-Wendy