PANDAS and Lyme

[pr40]

I was among those who did not understand why PANDAS and lyme forums have merged. Now, both of my kids have been diagnosed with lyme (igenex) and I am trying to figure out what this means exactly.

could it be that lyme is their underlying condition? and PANDAS a name for some of their symptoms?

(That would fit the picture.)

As you can imagine I have tons of questions as I am, apparently, a newbie all of a sudden.

We are even suspecting that lyme might be congenital.

So, my first question: has anyone here gotten rid of lyme?

What regiment did you follow?

 

[LNN]

Lyme is one reason they've come up with the name PANS - a Pandas response to more than strep. Lyme is a bacteria. It can provoke similar symptoms, including OCD and tics. So you might spend a few days mulling the label over in your head, but in the end, it's a label. Doesn't matter which came first, it only matters that you fight the chronic infection.

 

Yes, you can win the lyme battle. Yes, several of us have taken our kids off abx and sustained remission (knock wood). It is a loooonnnngggg journey and you may encounter hurdles - like co-infections, environmental issues that get in the way of healing (mold, metals, diet) and genetic issues (methylation, pyroluria). But there is a finish line and you will get there.

 

I was very much in favor of combining the forums - not to beat everyone up and insist they had lyme. But the things you can do to support the lyme journey is also helpful for "strep only" kids and the sharing of info/strategies has been incredibly helpful to me. They overlap quite a bit. So if you search the archives, you'll find lots of good info along the way.

 

On my way out and don't want to bore you with our specifics. We did lots of abx, supplements, testing, found pyroluria, found methylation issues - worked with an LLMD who's been a great collaborator - and we're in a very good place. You will get your kids there too.

[sf_mom]

Being at the IV Lab at our LLMDs office 3 times a week I get the opportunity to speak with lots of families from all over the place. Many children with gestational Lyme or chronic Lyme that were diagnosed at 3 or 4 years of age and are now much, much older and leading normal lives. These kids did have AD/HD, anxiety, OCD, depression, bi-polar, schizophrenia, TICs. Sometimes they were misdiagnosed for years. These kids have recovered. For some it took years......6, 7, 8 years, some have had mild relapses with joint pain but maintain off antibiotics for long periods of time. None of these parents have heard of PANS or PANDAS. These kids were also treated at time when resources were even more limited and our understanding of all the issues associated with chronic Lyme was much less.

 

For us and like LLM, we have found the integrative aspect of treatment: methylation, environmental toxins, vitamin/mineral deficiencies as valuable as antibiotic therapies. I feel these therapies beyond combo'd antibiotics give my kids the best odds of long term remission. We plan to remain forever diligent with our kids, teach them every thing we know to maintain health and will jump on any hint of relapse in the future.

 

First year: I felt shocked and hopeful, Second year: angry that all our kids were sick and frustrated that our family had to deal with the overhead. Third year: realistic, happy to have a solid team of Dr.'s that I trust, living a normal family life amongst all the overhead of chronic Lyme.

 

I have seen so many issues resolve even severe eye sight issues. Best recommendation is to find a great Dr/Dr's that can help with all the issues mentioned.

[tpotter]

Being at the IV Lab at our LLMDs office 3 times a week I get the opportunity to speak with lots of families from all over the place. Many children with gestational Lyme or chronic Lyme that were diagnosed at 3 or 4 years of age and are now much, much older and leading normal lives. These kids did have AD/HD, anxiety, OCD, depression, bi-polar, schizophrenia, TICs. Sometimes they were misdiagnosed for years. These kids have recovered. For some it took years......6, 7, 8 years, some have had mild relapses with joint pain but maintain off antibiotics for long periods of time. None of these parents have heard of PANS or PANDAS. These kids were also treated at time when resources were even more limited and our understanding of all the issues associated with chronic Lyme was much less.

 

For us and like LLM, we have found the integrative aspect of treatment: methylation, environmental toxins, vitamin/mineral deficiencies as valuable as antibiotic therapies. I feel these therapies beyond combo'd antibiotics give my kids the best odds of long term remission. We plan to remain forever diligent with our kids, teach them every thing we know to maintain health and will jump on any hint of relapse in the future.

 

First year: I felt shocked and hopeful, Second year: angry that all our kids were sick and frustrated that our family had to deal with the overhead. Third year: realistic, happy to have a solid team of Dr.'s that I trust, living a normal family life amongst all the overhead of chronic Lyme.

 

I have seen so many issues resolve even severe eye sight issues. Best recommendation is to find a great Dr/Dr's that can help with all the issues mentioned.

Couldn't say it any better myself. We are still dealing with abx for one of my children, and myself, but working towards the day that it's not needed anymore. The reason the 2 combined, is because we now know that PANDAS/PITAND are umbrellas under PANS as is Lyme, and viruses, and environmental issues, and genetic issues that all play a role in causing autoimmune neuropsychiatric disorders. And, it really is important for so many of us to try to get the whole picture, so if our children are not getting as better as they should, we have the information and resources that we need to help us figure out what may truly be going on.

[nicklemama]

I never dreamed my son would have infections caused by ticks because we've never known him to ever have been bitten by a tick. However, in hindsight, it makes sense. My son has never tested positive for strep nor have I ever suspected him to have strep. His PANS started after a Flumist vax. He has had pneumonia, probably myco P but wasn't tested until months after the fact, so he only showed IgG titers, which have always been previously negative.

 

Now he has tested positive for ehrlichia and anaplasma and is in current treatment. Suspected babesia will be treated in the future. Ehrlichia is most common in the south central states, including Oklahoma, where our families live and where we visit each year and where DS goes four wheeling with his grandpa. It's obvious to me, he was bitten by a tick while on one of our trips to Oklahoma.

 

We also take him to see a biomed doc. He is compound heterozygous for the MTHFR mutations. We are treating that.

 

After two rounds of IVIG, 18 months apart and treatment for MTHFR and ehrlichia/anaplasma, I can say he's doing better than he has in a very long time.

Edited May 18, 2013 by nicklemama

[sf_mom]

Just FYI: The one really healthy person in our household, DH got bit by a TIC two weeks ago taking out the garage or while BBQing in our backyard the night before. He actually got out of the shower and noticed his leg was bleeding. Then he noticed a TIC crawling around next to the blood. It was not embedded at the time but had obviously been embedded. It was crazy to think he may have never caught the bite. He is on Doxy and the TIC is being tested (do not have results yet). It can truly happen that easily.

[T_Mom]

IVIG and Plasmapheresis -- ARE these typically covered by insurance for lyme ?

thanks

[sf_mom]

There is a Dr K in CT that regularly treats Lyme patients with IVIG. I am not sure if it is typically covered by insurance. I think it would be if there was obvious immune deficiencies. I have also heard/read about the use of plasmapheresis for those with babesia. Again, not sure about insurance coverage for specific diagnosis. I have heard mixed reviews for these types of treatments when dealing with chronic infection. It's very individual and sometimes only temporary relief.

 

It might be worth a call to Dr. K in CT regarding IVIG effectiveness for Lyme/if its typically covered and a call to Dr. L to understand if plasmapheresis has been helpful to those with Lyme.

[LNN]

Wendy, who is Dr K in CT? Can you Pm me? Not an initial I'm familiar with....

 

T Mom, I wouldn't think you'd want to do Pex with a chronic infection. Wouldn't that be removing antibodies that you've made to fight the chronic infection? I'd think you'd want as many antibodies as you could get (and in that sense, I can see the argument for doing IVIG for lyme - but maybe not HD as you don't want to 1. suppress the body's own immune system and 2. the herx could be harsh (and this might have been why HD IVIG was so horrendous for my son).