Lymes/PANS memeory loss and word confussion

[HopeinHIM]

Hi All,

My Ds (10 yr old) has been on anti biotics for Bartinella/PANS for 4 months under Dr B. We saw great improvement for three months. Over one month ago we tried a few weeks of artimisinine and increased glutithione. Had major herx so we stopped all and slowly worked up to Anti B again.(removed her b and introduced slow gental detoxer from Beyond Balance) He has not returned to baseline and actually his cognitive skills and memory are progressivley getting worse. He can't remember words many time or get's word confusion often.I am very concerned that he is getting worse from the spiroketes but confused becasue it was really making positive changes in other areas. He is also claiming he feel "high" often and emotionally fragile again as he was many month prior to anti B's. WHY???? We are still giving him glutithione/chlorella and 2x a day motrin. Could this still be the fall of the toxins from the biofilm buster a month ago?? of is he declining from progressive bartinella even though we have been on anti B's. ?? OR PERHAPS the LS glutithione is not good for him?

Thanks you all of you!!

 

 

 

 

 

 

[SSS]

Uh, I don't really know, but here is a guess:

Maybe you were treating the Bart (great the improvements)

upped the art herb too high, it blew him out :-(

Off all antibx, and detoxing,

but the lyme Borrelia infection itself is now center stage.

I dunno, but brain fog, word confusion, makes me think of lyme,

which I am not sure you've really treated?

Maybe add back in a lyme antibx one at a time, see if improvement starts for these symptoms.

[HopeinHIM]

Thanks for the prompt response. This is my theory as well. My fear (I have many) is that I restart anti b and he becomes more toxic. We are very mentally fragile at this point. Can I get the name of your amazing Pandas specialist? I read you said great person as well as doc and that is so important.

[SSS]

Not sure what you mean by 'more toxic' I am assuming a CBC and liver panel has been done and all checks out. From what I have heard your lyme Dr. is very good,

but I'm in N. CA.

I did see an excellent PANDAS/ PANS specialist here (need a follow up) but we are also seeing a local LLMD, who doesn't normally treat children, so not sure I have referrals for you-

I didn't want to seem like I was giving advice on next treatment step, not my place,

just a guess from what you wrote.

[HopeinHIM]

Not sure what you mean by 'more toxic' I am assuming a CBC and liver panel has been done and all checks out. From what I have heard your lyme Dr. is very good,

but I'm in N. CA.

I did see an excellent PANDAS/ PANS specialist here (need a follow up) but we are also seeing a local LLMD, who doesn't normally treat children, so not sure I have referrals for you-

I didn't want to seem like I was giving advice on next treatment step, not my place,

just a guess from what you wrote.

Hi SSS

We had a CBC in august. Left many messages with doc team and no return call yet. They are so busy!! I have been requesting blood work for several weeks. I guess August is not that long ago so they are not concerned? I am just assuming will all this "stuff" I am pouring down his little throat eventually some bodies say "stop"!! I know much is helpful but it still has to be processed and I can only intuitively assume that he could possibly be overloaded. Heck....I guess I just don't know. Going next Tues to Doc B so I m sure He will do blood work. I did restart anti b cocktail today out of desperation. He was off for a week and Doc Tom said wait a bit and restart so I chose today after stopping 6 DAYS. Still nuero symptoms, head feels funny seeing things, feels like he cant talk at times, smell and taste distorted and loses time thru outt day and so on. I am concerned. Might request an MRI.

[SSS]

Glad you are seeing Dr. B on Tuesday, hold on-

It is possible to sign up online with Labcorp and Quest (most states) and receive copies of all tests online, sent to your email. Even old tests. I would see if you could do that, find his CBC drawn in August to print and bring to Dr. B.

Unfortunately, it's not unusual to backslide when removing antibiotics for a PANS/ Lyme kid.

Hang in there--

[nicklemama]

I have Lyme disease. I can tell you that brain fog, memory and word recall problems are a part of lyme. I don't have bartonella, so I can't comment on that. I have had major improvement since starting abx treatment for lyme. It's been 8 months and I have significantly improved but I'm no where near back to my old self.