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Please help.  We are on our 2nd round with Pandas and now Lyme co-infections with my DS(23).  Twelve years ago he responded beautifully to abx.  This time he has not responded to abx or to one round of IVIG (no response at 8 weeks).  He has treated yeast successfully, mycoplasma and H pylori successfully, no active strep or viruses, although ASOs still high 400s and Dnase B at 300.  Babesia duncani at 40, and possibly some bartonella - although no symptoms for any lyme or co-infections.  Physically he is the picture of health.  His symptoms as an adult are invisible but still debilitating - extreme social anxiety and consistent depression.  We are seriously interested in plasma exchange as a next step.  It seems logical that cleaning his blood of antibodies and then re-training the immune system would alleviate his symptoms.  We would love to hear some current experience with this.  

Who is doing plasma exchange?  Our provider said she would do it if she could; apparently its almost impossible to get in California. 

If insurance will not pay - how much does it cost and can one get the contract rate?

Does it matter that DS has primary diagnosis of autoimmune encephalitis?

I would really like to hear some recent experiences with this?  Most comments I see are from 6-8 years ago.  Does this mean that no one is getting plasma?   It is listed as a front line treatment for AE, which many or most of our kids seems to have as a diagnosis.

We have to make a decision about next steps.  DS is not getting any better.  NO better on the path we are on. Is plasma exchange a good option - obviously knowing there are no guarantees.

Thanks for any help.


Edited by beenthere
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  • 4 weeks later...

Our daughter was treated with plasmapheresis in 2017. She has pandas/Pans but not Lyme (we think?). She was typically treated adequately with antibiotics but for whatever reason we couldn’t get that one flare under control with abx or prednisone, so we went looking for ivig. ..

The immunologist we found had more success in his patients with plasmapheresis than ivig. Our daughter’s symptoms were severe at this point. It is also often easier to get insurance coverage for plasmapheresis than ivig, which is curious to me. For all these reasons, we went with plasmapheresis, and would do it again in a heartbeat. I cannot express how life-changing it was. (Two years out we may be needing it again, and if we do, I will be nothing but optimistic going into it.)

We are in VA so I don’t think I can help as far as who can treat near you. However, don’t take the “it’s impossible to get in CA” and just give up.... start making phone calls. Call area hospitals and ask if they do plasmapheresis at ALL, regardless of reason. Ask which immunologists order it. Work backwards from there. You are at an advantage because of your son’s age, as the issue is often finding an apheresis unit with the capability of treating a peds patient. Your son is not a peds patient so you already don’t have that barrier! I do not have experience with Lyme related to plasmapheresis. Also don’t take the “insurance won’t cover” without checking your plan on your own. You can call and ask if the cpt code is covered (I don’t have it in front of me but could find it) and whether it needs preauth. Don’t give up.

Hope I helped or at least gave hope. Good luck. 

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