Pans Docs Consensus Regarding Lyme?

[ibcdbwc]

Curious regarding the PANDAS/PANS (Dr. T, Dr. B, Dr. L, Dr. K, Dr. Murphy, NIH...) experts and their feelings about Lyme/ co-infection involvement. Assuming most will screen, but since tests prove not reliable and since it's a clinical diagnosis - what do they say?

 

Certainly linked, as theory for infectious insult to trigger rogue/dysfunctional antibody response in a susceptible/compromised immune system exist for both. But a divergent treatment path considering IVIG and steroids may not benefit the Lyme patient.

 

What is the current treatment pathway then? Is there a branching point at which they say head down the lyme path vs. head down the more traditional (for lack of a better word) PANS path (assuming no clear trigger like strep or myco is identified and/or titers are stable).

[Hrosenkrantz]

Hi -- I'm not sure what the right answer is, but in my experience, there appears to be a split between the straight up PANDAS doctors and the immunology doctors who look at/look for/treat co-infections. My son has been to four of the top doctors in this space, plus other doctors. I think unless its a clear cut, obvious case of lyme, there is going to be a lack of consensus among the experts. In fact, looking at the list of doctors you list above, I'm sure they each have their own protocols on specific antibiotics, ivig, steroids, etc.

[sf_mom]

No body knows... not even the Dr.'s fully understand. I think Dr. B probably has the best understanding of Lyme and its impact on PANS of all the Dr.'s listed above.

 

After 4 years of treating, I have come to the resolution that you need to stick with what works for your child and know there are alternatives to treatments if something doesn't work. Some are treating purely auto-immune and those therapies have helped their children tremendously. Some of those treatments have also failed for others. We have treated solely for chronic infection since 2010 when our son looked like he couldn't sustain benefits of IVIG. We have had great success with this direction but it has been a rocky, slow recovery. For others, treating solely for chronic infection hasn't been the answer either. Neither path is easy in my opinion.

 

When we started this journey it felt like there was a narrow perspective on how to treat, now with many parents experiences of failures and successes with their children that scope has change tremendously. There was a time if IVIG didn't work it was thought the child was just 'mentally ill' and did not have PANDAS... thankfully we are beyond that perspective.

 

IVIG can benefit Lyme patients. Dr. Katz from CT spoke about it at ILADS this past year. Doses might be slightly different than PANS/PANDAS. Steroids can also benefit someone with Lyme. A friend of mine with chronic Lyme has been on low dose steroids for Adrenal Fatigue since last year. For me, steroids triggered seizures while pregnant with twins and as a result we steer clear of their usage. Again, it can be very individualized and based solely on treatment response.

Edited February 13, 2014 by sf_mom

[PowPow]

 

 

After 4 years of treating, I have come to the resolution that you need to stick with what works for your child and know there are alternatives to treatments if something doesn't work. Some are treating for purely auto-immune and those therapies have helped their children tremendously. Some of those treatments have also failed for others. We have treated solely for chronic infection since 2010 when our son looked like he couldn't sustain benefits of IVIG. We have had great success with this direction but it has been rocky, slow recovery. For others, treating solely for chronic infection hasn't been the answer. Neither path is easy in my opinion.

 

 

this is excellent advice. It is a travesty that we have to "experiment" on our kids, but it is the truth. you have to try different paths until you try one that works. I know it makes me personally cringe when someone refuses steroids-- but it is worked for us--

 

just as treating evasive Lyme or alternative medicine or oils or herbals works for others & we wasted so much time and money on that route.

 

anyways, wonderful advice and very well said, sf_mom.

[airial95]

The real answer is - there is NO consensus. Some of the experts listed acknowledge that Lyme and other infections can trigger PANS, but that's about it and don't screen for it routinely at all, still others will do routine testing for Lyme, and stop there. I think that as for the doctors listed, Dr. B is the only one that will do Igenix testing for Lyme as a standard course of action (even if there isn't reason to suspect Lyme - he will still run it as part of his standard diagnostic labs). Even Dr. T - who really digs deep for triggers - runs only the standard Western Blot unless specifically asked (or labs indicate a need) to run something more specific.

 

The unfortunate reality of this disease is that it is still far to "young" of a diagnosis and research is still needed for that consensus to be reached. Research, unfortunately takes time - which is what sucks the most for our kids, because in a way they are "experimenting" on them in the meantime. At this stage in the game, as more is learned, sometimes it makes things more murky than anything. When we first started on this journey 4+ years ago, strep was the only thing that was considered to be a trigger for PANDAS. Period. Most of the experts listed above even refuted that myco was a trigger. As research has shown that other infections - including myco and Lyme - can actually trigger this condition, I think it's made it harder to come to one clear path of treatment. The path to treatment may actually be different based on the trigger - and there's still a long way to go research-wise to figure that out.

 

I know I'm on an island with this one, but I don't think Lyme and PANS/PANDAS is as linked as everyone else. I still see them as two completely separate and distinct issues. Can Lyme trigger PANS - yes, absolutely, as can any other bacterial/viral infection. However, since Lyme can also cause many of the same neurological symptoms on its own - absent of the PANS immune response - the question becomes how do you know which you're dealing with if there was no sudden onset? It's a question I always seem to get yelled at for asking, but it's one that I still struggle with.

[3bmom]

I wonder if it's the chicken or the egg theory?

 

We had sudden onset, tucked into bed sweet as can be and woke up as if aliens had taken his brain. Tested positive for strep so PANDAS it is! Than I dug deeper and found Stachy mold behind his wall, dug deeper and found HHV-6, dug deeper and Myco. Dug deeper and we had hidden life threatening allergies. Deeper still and learned the our food supply, the foundation of our health has been altered dramatically the last 15 years. Would not be surprised with Lyme but our Dr. is on the other side of the fence. I myself tested negative on the western blot but positive on the culture.

 

My feeling is the trigger is just the straw that broke the camels back rendering the immune system dysfunctional. It was already at a critically high level of inflammation until it hit overwhelm.

 

I spent many years on the East Coast hiking and camping. I find it hard to believe I never got a tick bite when we removed around 20 a week from our dog. I always wondered if I got bit and my immune system was strong that maybe it just squelched it and then it lays dormant, just like cancer. When our system gets knocked out by stress, toxins, infections and poor food it may rear its ugly head but only if there is a prior history.

 

Just my thoughts because as I remove each of these layers we have been blessed to see improvements. As I learn from amazing moms on this site to heal the gut lining our immune system and support detoxification which has been swept under the rug due to a system in crisis I hope and believe for full recovery.

 

The medical community is slow to change and honestly a generation ago this barely existed. Now with Autism 1 in 50, learning disabilities 1 in 5, PANDAS/PANS our kids brains are being hijacked. Thankfully there are Dr.s who are fighting for our kids. They may not understand it all or have all the answers but they can see the difference diet, an antibiotic, antiviral, IVIG can do.

 

These Drs are the leaders in a new frontier. Willing to let their reputations take a hit for striving to help kids. Not afraid to rock the boat for the better good. Just like we are parents striving to find the child we once knew, learning along the way in uncharted territory and circling the wagons to help each other.

 

Why us? Who knows....Maybe because we are survivors, fighters, the ones who won't give up, the ones who need answers....

[Dedee]

SF_Mom said it very well and I agree. We have been to several experts. Have been to a PANDAS clinic and thank goodness for it. Now we are working with an LLMD. This is highly individualized when it comes to treatment and outcomes. I don't have answers but I do have recommendations. You need to read and educate yourself as much as you can. Read books and articles on lyme. Read everything you can find on Mycoplasma. Read all the recent articles on PANDAS / PANS. Then you are in a place that you can make an educated decision on what seems right on diagnosis for your child. Am I saying you have to diagnose your own child. Well, yes in a way I am. Each physician will tell you what they think. And you could get as many different opinions as physicians you see (you know what they say about opinions). You need to take the information from these physicians and see what seems to make the most sense and most logical based on your childs history. For instance, if you do an Igenex lyme test and it comes back with several lyme specific bands showing indeterminate on both the IgG and the IgM and you have a physician telling you that is flat out a negative result, you will be educated enough to know that an indeterminat band (to an educated LLMD) is the same as a positive band. Now, because you have done your homework and you know about lyme you know it's time to leave this physician and move on to one who knows what they are doing. You also need to know when to stop digging and just treat what you got. This illness requires parents to educate themselves. Thank goodness, that's what we are all here for. To help one another. We are all in different places, but we can still help and support one another. Best of luck.

 

Dedee

[Hopeny]

Richard Horowitz talks about multiple infections in his new "Lyme" book Why Can't I get Better? It's worth a read. My DD never had a + strep swab before she got Lyme and now we can't seem to get rid of strep. Lyme has wrecked her immune system and seems to have caused a chronic state of inflammation. Our LLMD's have all discussed IVIG at different points. In my opinion the important reason to have a real Lyme assessment is 1) the treatment course would likely be different than just strep and 2) where there is Lyme there are co infections which require different approaches. I'm definitely one who is always ringing the Lyme bell as it's concerning to me to hear people whose kids have fairly obvious Lyme symptoms along with Lyme specific WB bands but are told their kids don't have Lyme and to move on. I'm constantly exploring everything and I would encourage others to do the same. The trouble with Lyme and steroids as I understand is if they are used early on before treatment there is a risk of worsening the case. If its a new case of PANS, with no prior treatment, and there are Lyme symptoms, then it seems reasonable to get a thorough evaluation before trying steroids. If it's someone who has been on abx treatment, then it could be thought about differently. It's the same with IVIG, I'm not a doctor but from reading people's stories it seems that early IVIG treatment without addressing Lyme seems less effective that Lyme treatment followed by IVIG.

My DD's former ped prescribed what I learned was an extremely dangerous and ineffective treatment for her mild asthma.(pre pandas) I was eventually forced to consult a pulmonologist and wow what an eye opener, I decided after that experience to only use a specialist to evaluate each specific problem. So it's the same as I recommend for Lyme, get an expert evaluation by someone who has seen/treated thousands of cases. Eventually as the PANS model evolves, I think treating doctors will need to gain more expertise around all of the typical infection triggers, just as LLMD's now are starting to better understand PANS. IMO, the treatments can easily converge...

[Dedee]

Well said Hopeny.....

[rowingmom]

We originally sought help from an LLMD for DD's pain symptoms. When I asked about DD's PANS symptoms the LLMD just smiled and said that those too would resolve with bartonella treatment. She was right, infections other than strep can cause these types of neurological symptoms.

 

http://www.onehealthinitiative.com/publications/Breitschwerdt%20J%20Neuroparasitol%20Review%202012.pdf

[ibcdbwc]

Thank you to everyone. I learn so much from each of you, every day. Am so thankful for this community!