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What to expect herx wise from treating ehrlichia


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DS has been dx'd with ehrlichia and anaplasma and possibly babesia (came up neg but doc has a hunch and has seen a lot of babesia in neg kids). We are starting with ehrlichia and anaplasma treatment first. What should I expect herx wise? She wants me to start the doxy on Fri in case of herx.

 

It's still a little surreal to me. We've been treating for PANS for 2.5 yrs. He's had IVIG twice and has had great response. Went with #2 after a huge exacerbation after mycoP pmeumonia in early Nov that undid everything.

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If you are not dealing with Lyme, my thought is you would not see much herx with ehrlicia/anaplas alone. If you are dealing Lyme, doxy may pack a punch. In our case dd would have a good long crying jag, bad joint pain, and general upsetedness (probably not a word) for a couple of days when switching abx. Early on she even had one hallucination. The good news is that those confections as far as I know are well addressed with 30 days if foxy, unlike the others which take much longer. I believe doxy also has some anti parasitic effect so you may see some herx from babs too if you may be dealing with that. Our first try with doxy brought dd to a much better place very quickly, good luck

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Doc doesn't think he has Lyme. We may find out differently after starting treatment. Thanks for your reply. I'm hoping for the best and trying to prepare for the worst. After nearly 4 yrs of PANS, I'm a little tired of the worst, lol.

I cannot imagine how you could have Ehrlicia without Lyme, but I think you wrote that you never saw any Lyme symptoms so hopefully that will be the case. Did you do an Igenex WB? Were any bands pos or IND? I have not been able to find out much anywhere or from anyone about Ehrlicia or Anaplasmosis. The good thing about knowing is once you know you can address it. Hopefully this will make a difference for you. BTW it says don't take Doxy at meals but most people do because it can upset the stomach. Let us know how things go!

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He has never had Lyme symptoms, you are correct. We have not done Igenex yet. We are proceeding with ehrlichia treatment, move on to babesia treatment after that and then retest with Igenex to get the most bang for our buck. He only had band 45 positive on quest and that is consistent with ehrlichia. She said if 41 had turned up positive, she'd dx him with Lyme. She does not Dvertise herself as an llmd. I just recently disco ered her. At yesterday's appt, she told me she's treating quite a few kids for babesia right now. She treating even on negative tests when she feels the clinical picture says otherwise. We are going to get started now and probably see an llmd in summer. It requires us to drive quite a distance.

 

He has responded very well to IVIG, which is curious to me since I read Lyme kids don't typically respond to IVIG.

 

I am a little suspicious of bartonella, even though it was negative, because of his irritability when on exacerbation and tendency to rage. I think if he has it, it will show up with treatment.

 

I am getting myself tested. I have very strong suspicions that I have Lyme. DS was adopted, so he did not get this from me. He was born in Russua and his doc is very mindful that there could be positive bands for him that are not tested here in the states.

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Our older DS also responded well to 3 hdIVIGs for original PANDAS diagnoses. One year post his sudden on-set, he was maintaining at least 90% improved or better but he could also not achieve 100% remission for any length of time. He did have blood in his stool 8 weeks prior to Lyme diagnoses and why we went to see an LLMD. Our Igenex test was band 41 positive only. We eventually got a DNA match from his urine and how were able to determine he had Lyme.

 

I too think your DS's recent results indicate he may have Lyme as well. I would expect a herx but thankfully some are fairly mild and you get rapid improvement but some can also last a very long time and are more intense. In our family its a matter of degree of Herx.

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Thanks SF Mom. We are seeing the same....great improvement after IVIG but not maintaining long term. He did really well for about 17 months after the first one. This new doc thinks she can get him well. She's very optimistic. It's been a breath of fresh air. She's not a PANS expert nor Lyme but she seems very knowledgable about Lyme and she's willing to learn PANS. She has listened to all Dr T's PANDAS radio programs. After the multitude of doctors we've seen, she has given me renewed hope and I'm finally getting local help after all this time. She doesn't take insurance but her charges are very reasonable and she spends time with you.

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