Gastrointestinal Lyme

[tpotter]

We get our bentonite clay at Vitamin Shoppe, and use the Great Plain brand. We only use 1 t daily (although it says to take more), but we take it every day. I don't know if that's the recommended amount, but that's what we take. We have also been rotating with carbonized bamboo (Takesumi Supreme) that he got tested for with muscle testing...but we get that through our holistic chiropractor.) We also started trying to activated charcoal, because it's not so messy (they're in pills.) Our LLMD does not really talk about detoxing, but I do believe it's very important.) We try to space this at least 2 1/2 - 3 hours between abx, as it gets rid of EVERYTHING.

 

Also, the pearls are available from Vitamin Shoppe. DH uses those, but the rest of us use other things that we get from our holistic chiropractor after muscle testing. We ALL take saccromyces boullardi (floristor withOUT lactose). We use the Jarrow formula, and take 2 each day...all our probiotics are taken away from abx.

 

Also, this thread has REALLY helped us, as DS 15 started getting terrible reflux last week, along with a slew of other symptoms since starting him on 2 herbs (artemesia and candibactin). He was also on a lot of oils (coconut oil, omega, d3,) and was taking a lot of glutamine. I figured the neurologic and psychiatric symptoms he was getting was a huge herx, but never figured the gut issues were. But, when the reflux got so bad that he had to be rushed to the ER, because he couldn't breathe (might also have been air hunger,) local DAN! doctor and I decided to take him off almost everything. BTW, he did have allergic reaction to several abx while on PICC line over the summer.

 

I just read my DS15 some of these posts, because I had the feeling that we needed to be doing the herbs. I really feel like they are the right thing, but I will give him a much smaller dose, because the neuropsych symptoms were intolerable (unable to sleep, and then started having his nightmares again, and finally hallucinations!) He needs to get better, but I think slowly might be the answer (our holistic chiropractor who gave us the stuff after doing muscle testing, believes in starting high and tapering off. That's not bad, but my DS is very hypersensitive, so for now, I go low, and gradually got up.)

 

In the end, you have to decide what is best for your child. BTW, we are treating his terrible reflux that he got with nexxium, because it was so severe, and nothing else worked.

 

But, thank you all so much for helping reinforce to my DS that what he had was a herx, so he's not so afraid to try it again.

[JGsmom]

Its funny.... I always remember the twin mom's posting to the forum because of its unique experience. I am so relived you are back, getting proper help and we are reconnecting.

 

I still think because of the acid reflux and all your attempts to manage the problem unsuccessfully there might be 'something' else. When doing a stool samples they will check for H. Pylori, Giardia, C-Diff and Unknown parasites, etc. Safer to rule out as it could be a simple fix and another 'infection/issue' his body can not resolve on its own due to underlying Lyme.

 

All my children present differently:

 

DS1: Predominately TICS with sudden on-set after strep related illnesses (all other PANDAS symptoms). OCD resolved over 18 months ago. Originally PANDAS diagnoses.

 

DS2 (Twin): Predominately OCD/Rages and no sudden on-set, Autism traits, full body rashes. He has developed minor shoulder shrug as a result of treatment that has since resolved.

 

DD (Twin): Autism traits, low body weight, full body rashes, anxiety 'at times' and no sudden on-set. Did notice eye blinking on two occasions after fever.

 

We have positive results for Babesia, Bartonella, Lyme, XMRV, HHV6, Coxsackies, Parasite 'resolved', Strep 'resolved'.... in our family.

 

I have spoken to many that get converted test results after treating for some time. I am so happy you found the bartonella in the one son. Again, it is an 'indication' the other son has it was well. I am convinced you'll figure this out for both of them.

 

-Wendy

 

Wendy--

 

You have such strength--3 children with congenital TBD, etc. And I was feeling sorry for myself when the second one got dx'd. I have been very upset and worried about both, but DS-G with the horrible post-prandial pain and gas and morning stomach aches has me very upset.

 

Dr, J does suspect bartonella for DS-G since DS-J has it.

I have a phone consult set up w Dr. J for tomorrow as this is perhaps longer than a herx should last? Hopefully we will come up with something for DS-G. I didn't post here for quite a while as I have been taking DS-J to IVIG 3 hours away at Dr. B every 6-8 weeks and I bought the business where I have been working for 23 years and became a business owner--great, but very stressful to manage with 2 sick kids, as I'm sure every parent on this board knows. So it left no time for writing. I came back because I needed some advise from you all about my second little man.

It's great to reconnect.

Terry