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15 yo, previously treated, need opinions

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Lyme Disease
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Posted 3/17/2016 11:56 PM (GMT 0)
My now 15 yo DS has been chronically ill for 2.5 years. Prior, we was treated for Lyme disease (Western blot positive) when he was 2 and again (Igenex) when he was 10. His symtoms then were primarily stomach-related. On Labor day just before his 13th birthday, he caught a stomach bug. He hasn't been the same since. My first thought was Lyme, of course. However, he was "cleared" by his Lyme doc at the beginning of that illness.

He's had severe stomach cramps, nausea, and bouts of vomiting for the last 2+. He missed all of 7th grade and half of 8th grade. His freshman year in HS is not going well.

We have seen an infectious disease doc, a neurologist, an endocrinologist, several POTS specialists, at least 6 gastroenterologists and every specialist imaginable after that. Diagnosed with POTS. Nothing helped. Diagnosed with cyclical vomiting syndrome. Now the GIs are turning him away b/c their trusted treatments are not helping.

Do you think we should pursue the Lyme again? Has anyone had a similar experience or any words of wisdom?

Thanks. Not an easy road.
Posted 3/18/2016 2:54 AM (GMT 0)
I am so sorry you and your son are dealing with this!

Was your son only treated for Lyme? Is it possible he was reinfected?

It might not hurt to get a second set of LLMD eyes to look at him...
Posted 3/18/2016 2:58 AM (GMT 0)
Oh my gosh how horrific for a parent to watch. I am so very sorry.

Do you suspect that his lyme was only in remission and has resurfaced? Or like cd said, what he reinfected?

You are the parent and have your suspicions --what do you think?

Do you think it is lyme? Because you wonder if it is lyme again causes me to think you wonder this in your heart.

If I wonder, I chalk it up to intuition and I go with my gut. Otherwise I will continue to wonder.

Go have it checked out. Peace of mind is worth so much and what does it hurt???

Blessings abound.
Posted 3/18/2016 3:59 AM (GMT 0)
So sorry for your aggravation, pain, frustration, and all the other things that come up with such a situation. How was his lyme treated? Anti-biotics alone? The naturopath I met with who is symptom free from lyme did not feel it was enough, anti-biotics, and the Chinese MD today said that the organisms is really stealth, it knows how to adapt, and hide out. It might have gone into hiding so to speak and re-surfaced when your sons immune system was compromised. Someone suggested to me on this board Horowitz's book and I found it awesome. They also suggested herbs. It wouldn't hurt to look at nutrition and Buhner herbs while you are seeking answers. It can only help. So sorry you are going through this. It must be terrible to watch your child go through this.
Posted 3/18/2016 1:51 PM (GMT 0)
Was he treated for coinfections? If not, I would be highly suspect of them. Bartonella can cause gastro issues.
Posted 3/19/2016 12:53 AM (GMT 0)
I was just reading on here:

drhedberg.com/herbal-medicines-for-thyroid-disorders/

and noticed that Yersinia can cause gut symptoms like your son has.

One of our other mods shared everything she knows about Yersinia here:

www.healingwell.com/community/default.aspx?f=30&m=3547795

Hope this helps somehow....
Posted 3/19/2016 2:52 AM (GMT 0)
NSZ's. - I am so very sorry to hear what you and your loved ones are having to endure. I cannot imagine.
Have the doctors ruled out the bacterium H. Pylori? Please keep searching for answers. God Bless.
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