Bullseye Rash, Lyme and New Tics

[cobygurl]

Hi All,

It's been awhile since I last posted.  Our 9 year old who started exhibiting PANS and Lyme symptoms when he was 4 years old has been doing really well.  Seems though every couple of years we have a major flare up and last Friday he ended up with what looked like a mosquito bite but turned into a bullseye rash on Sunday evening.  

I spoke to his LLMD on Monday and they put him on Samento, Banderol and Houttuynia (1 drop twice a day increasing by 1 a day until 20 drops twice a day.) We have not gotten those yet as they needed to be shipped to us.  

In the meantime his ND but him on an herbal tincture of Cats Claw, Japanese Knotweed along with some others herbs, 40 drops twice a day.  

Anyways we titrated up and he seemed fine until we hit the 40 drops and now he has developed a mouth/tongue tic and blowing tic we have not seen since his major flare up with PANS when he was younger.  He is also acting a little hyper and talking in strange voices.  Could this be a herx?  I have decreased his dose to 30 drops twice a day until I can talk to his ND after the weekend.  

I am am so sad and frustrated.   I have some PTSD from when we dealt with the onset of his PANS/Lyme from 5 years back and this episode seems to have just brought that all back.  

What can I do to help his herxing?  Does this sound like herxing?  

Also, anyone try the Samento, Banderol, Houttuynia for their children?  I have heard the herbals are really strong, even at one drop per day and I'm afraid his body won't be able to handle it (along with my frayed nerves.)

He was not put on any antibiotics for this bite as the LLMD and ND thought he might do better to tackle the Lyme with herbals.  Is this the right call?

I would appreciate any thoughts.  I just find myself crying a lot these last few days.  

We have been so careful with him, using every precaution I can think of to protect from ticks but it seems he got a bite anyway.  

Thanks for listening and any advice offered.

 

 

 

Edited August 26, 2017 by cobygurl
Added more info. Correct typos.

[bobh]

So sorry to hear about this flare, and the PTSD stress you have as a result.

We  have not tried Samento, Banderol, Houttuynia, so can't give you any feedback there.

Has your son previously been on Cats Claw, Japanese Knotweed and the other herbs that he is on now?  I ask because when many things are introduced at once for the first time, you can't tell if he is having a bad reaction to one of them (i.e., not a herx, but something that actually triggers him).  We have had that kind of non-herx worsening with some probiotics, for example.  If he has been on all of that before and been ok, then I could believe that it is more likely to be a herx.

What is the reasoning that the LLMD and ND use for holding off on abx?  I am a little surprised, but don't have experience with lyme.

[Wombat140]

Have you got Stephen Buhner's book "Healing Lyme"?  It's a vast reference on all kinds of stuff about herbal treatments for LD (and on LD in general - I understand how LD actually works far better than I did before I got the book!) 

Bear in mind that thre are different schhools of thought aboiut herbal treament for LD.  Samento and Banderol are proprietary herbal extracts (Samento is a specially treated Cat's Claw, Banderol is some plant that I don't thi nk anyone else uses but them) that belong to the Cowden Protocol, which Buhner has a veruy low opinio of for various reasons; however, othee people swear by it. 

One thing about the Cowden Protocol is that I have the impression it is quite strong by herbal standards.  The full official protocol includes various things that are purely to counteract any herxes, and also requires drinking outlandish amounts of water to flush stuff out - 3 litres a day for an adult!  I'm not sure whether taking the Samento, Houttuynia and Banderol alone ois something you're supposed to do.  It may be, but you might ask.  (That's their theroy, anyway, and mighjt not be right; I've seen one person asaying mounrfully that the anti-herx rremedies gave them herxes  :-)  )

The ND's prescription sounds more like something inspired by Buhner's protocol - ordinary Cats Claw and Japanese Knotweed are among the central things in that.  I beileve that's less drastic than the Cowden ones - Buhner's principle is that it's not rue that you're not getting better if you're not herxing, he claims that the majority of his patients don't get that at all and if you do you should lower the dose and see if that helps.

Good luck!

[cobygurl]

Thank you so much for the replies.  

His ND ended up reducing his tincture to 25 drops twice a day from the original 40 drops twice a day and the ticcing stopped (thank goodness!)

He is now on 6 drops twice daily of the Samento, Banderol and Houttuynia and he seems to be tolerating it.  We are decreasing his ND's tincture as we titrate up.

Sadly, we've come up with a new problem.  

His LLMD asked to run some bloodwork and so our family doctor here in Canada ordered it.  

Anyways, it came back with abnormally low neutrophils and a low white cell blood count.  

Has anyone experienced this?  

My family doctor has me in a panic because she is sending him to a specialist to investigate for Leukaemia.  Also, since they are so low he is very susceptible to infection.  

ND is convinced it's Lyme doing this to his neutrophils and I have not had the LLMD weigh in yet.

Anyone have any thoughts?

I'm one worried mama   

 

Edited September 7, 2017 by cobygurl

[Wombat140]

Hmm, well, I get the impression that GPs tend to have a standard checklist of things that you automatically try or test for if there's a certain symptom.  (For instance, one of the rules of thumb around here seems to be, in the event of any persistent digestive symptom at all, start by trying proton-pump-inhibitor acid blockers just on the off-chance, whthter it makes any sense or not.)  Testing for leukaemia suinds to me like something that she always does if somebody's blood count goes beyond certain limits.  It would make senmse in general, and it's right of her to check, but in the case of a kid who is known to have a disease that messes with your immune system and white b lood count, well, it seems to me that you don't really need any other explanations. 

I'm not sure about neutrophils specifically, but Lyme disease definitely can lower white blood cell counts; it's a survival mechanism, the bacteria actively swithc off parts of the immune system to reduce their chances of getting caught.  Very clever, but not helpful!  In fact, Lyme specialists often expect to see white blood cell and antibody counts go UP once the treatment starts to work, because the bacteria are weakening and have stopped interfering with them.  (A rather back-to-front situation, where more antibodies to Lyme disease showing up on the test means that the infection's getting weaker!)  I had low white cell counts myself the last two times I has blood counts done, but I was low on iron too so my GP wrote it off as due to that without needing to accuse me of having leukaemia.  Anyone who can remember the details better, or where neutrophils fit in, back me up on this?

P.S.  Anyway, I'm very glad to hera that the ticcing has stopped, and without you having to stop the treatment completely!  Good luck!

Edited September 19, 2017 by Wombat140