paralysis: entero-virus, lyme, other, both, all?

[stacestar]

hi all,

I haven't posted here in quite awhile. My son (4) has had lyme, but thankfully, is doing really well, almost symptom free, so I haven't been on the forums as much since maybe spring.

Now here I am with a general question about my cousin's son.

The question is, I'm wondering if anyone has any ideas about Dr. recommendations, and also, to be honest, just any thoughts in general. I find the more I read and people share, of course the more I learn and a new idea or thought can lead to something that may help.

 

I'll try to keep his situation brief and write it in summary/main point style.

 

-mid August, he began experiencing unusual fatigue.

-around August 17th, he gets flu-like symptoms, including respiratory mostly

-Aug. 20th- pediatrician diagnoses him with pneumonia; blood work looks good though

-two days later, loses movement in his right arm

-blood work still normal, they send him home, but to ER that night as it got worse

-that night, to Peoria to children's hospital

-by the next day, loss of movement in both legs and lung collapsed
-he was given steroids too starting the second day; I don't remember if lung collapsed before or after that

-they did IVIG, no help really, plasmapheresis, no help really

-Dr.s think a virus, but are "confused", have "never seen anything like it"

-so, for 4-5 weeks now paralysis in two and a half limbs, yet can move hands and feet. trouble breathing on own, so intubated

-also for that time, swallowing muscles so weak, he can't eat. feeding tube in.

-CDC lyme test negative. They are testing through Igenex now (this week) just in case.

-all other tests negative too.

 

you may have read/heard about the enter virus going around. This has all happened at the same time.

Now last night I read that 9 other children are experiencing partial paralysis in limbs in Colorado. 4 of 8 tested were positive for entero virus 68.

I am certain they tested my cousin's son for this, and it was negative. but not every test is perfect of course.

Also, he and his family were in Colorado in early August, right before he got sick.

 

I still think they should test with Igenex (and again my cousin said they are; PCR urine and Lyme Dot Blot), b/c these could be lyme symptoms. It is suspicious though, of course, that the other Colorado children are experiencing paralysis too. My cousin's son, though, has it affecting his respiratory system too, which I believe the other children do not.

 

I wonder about maybe two infections? what if enter virus and something else. You know, one being the straw that broke the camels back, b/ there was something else at play already, underlying (i.e. lyme, etc.). Don't know.

 

I just wonder, with all of the children being reported as to going to the hospital for this enter-virus (hundreds!) why is this small, very comparatively small number of children experiencing paralysis, and why is my cousin's in his respiratory too?

 

I think a Dr. like Dr. Corson or Dr. Jones, or someone open minded and lyme literate just in case would be good for him.

 

Any thoughts, ideas, stories...they all help.

 

Thank you so much. I feel so desperate to help him. This is so heavy on my heart. I just can't believe that what the Dr.s are saying is right "to prepare that this is his life" being paralyzed. I think it's more than just being hopeful to think he can recover. I think there is truth to it.

 

Thank you for any comments, or ideas. It can all lead to something more perhaps!

[LNN]

I too read the story about the 9 kids in Colorado but I'm sceptical that if only 50% of the kids have enterovirus 68, that alone would be the culprit (tho I do realize testing may not be 100% and like you, agree it may be a combo of infections/vulnerabiltiies). I'm glad to hear they're testing thru Igenex - your cousin may want to call them and ask to speak to one of the doctors on staff to mention his visit to Colorado - they may be aware of TBIs and other infections in that area that could be tested for.

 

As for his current doctors, I'd fire any doctor who told me to give up and accept paralysis and a life of tubes for my child. I'd be scouring the net for doctors who specialized in vector-borne diseases and try to connect with the team that's working on the 9 Colorado kids. I'd also email Pam Weintraub, author of Cure Unknown and a number of excellent articles on mystery illnesses. She may know how to contact some of the best minds in the field who are open minded to things. http://www.astralgia.com/

[stacestar]

thank you llm for you response and ideas. Those are great ideas, about contacting Pam Weintraub (I've read that book and was very impressed!) and the Colorado team.

And, definitely I agree about firing that dr.! I mean in one breath, she's said "I don't think he'll get better, prepare for this to be his life", and then in the next breath she's telling my cousin, "I don't know what this is. never seen anything like it. confused, perplexed by it" words and phrases like that. Well, dr. if you're so unsure of what it is, then don't be so sure the outcome won't be good.

 

and, yes, open minded is what we need. I'm familiar with Stephen Buhner's books and lyme protocol, etc. and so asked him on his Facebook page yesterday if herbs can help recovery from paralysis from an enter-virus (if that's what is going on) and he replied (which I loved) and said, they can. He did say "not always, that it can depend on things", but said they also "can help; sometimes completely". So there are options and things to look into; digging deep.

Colorado tick-borne infections too to look into.

 

Great ideas! thank you very much!

[sf_mom]

There have been many cases if entrovirus in CA. 5 were handled at Stanford and those children had a respiratory illness just prior to paralisys.

 

In addition to Lyme I would check chlamidyia pneumonia and mycoplasma if they haven't already.

[stacestar]

hi sf_mom

 

thanks for your reply too; I've read about those cases. In fact my cousin's son's dr. had referenced them to them and noted the similarities. What's unusual in his case, compared to the others (CA and I think now these new ones), so the dr. said even, is that the weakness/paralysis is affecting his respiratory system; he had to have a tracheotomy placed yesterday as they prepare him to be mobile for the rehab. dr/center, and he has a feeding tube, since he can't swallow right now; also something the others aren't reporting.

 

it's quite a coincidence that he and others are experiencing limb paralysis after respiratory illness; it does seem connected (since they were in CO in August, but I don't know what city). An article I just read this evening mentioned to not panic, that thousands of children (it said hundred of thousands even) are having this virus and are ok. What is it with the small handful that are experiencing some paralysis? What's the difference? We need that answer. I pray they/we can find that answer.

 

thank you for the ideas of chlamydia pneumonia and mycoplasma. I mentioned to my cousin too, to have him tested for them if not already. She didn't say (through messages) if they had tested for those yet or not. If I were her I'd test for everything under the sun that may cause this. And, I think she's wanting to do that; starting with lyme. As she put it in a message, it's a very confusing, weird, and difficult time, to say the least.

thanks again for thoughts and ideas!

[LNN]

This article contains a little more info http://abcnews.go.com/Health/cdc-investigates-limb-paralysis-children-enterovirus-68-outbreak/story?id=25804998

"What ties them all together though are findings of spots or lesions in the grey matter of the spinal cord on MRI scans."

 

Has he had an MRI scan on his spinal cord?

[stacestar]

hi llm

 

Yeah, he's had several MRI's on both brain and spinal cord (3-4 of them). I don't remember if my cousin mentioned spots or lesions on the spinal cord, but I do remember for sure that she said there was "swelling" that showed up on the brain and spinal cord (encephalomyelitis). The dr. was thinking that was why he couldn't move limbs. She had said something about the swelling may be blocking nerve responses or something like that.

On his second or third MRI there was reduced swelling, and on his last MRI (last one I know about, two weeks ago) there were signs of "regeneration" at the nerves (I think that's how it was put). That was two weeks ago, and he's still not improved. It was after that particular MRI that the dr. told my cousin, she didn't think he may regain use of limbs, which is confusing if there's regeneration happening.

The dr.s were talking about "demyelation" and "axonal" nerve damage, and my cousin said they were praying/hoping it wasn't axonal (I don't know the differences) but I never heard which one it was.

 

I read that about the spots on spinal cord too. I'm curious if he has them too.

[sf_mom]

Since you don't know what it is, nothing seems to be working, there is swelling and possible nerve damage have they consider hyperbaric therapy with him 'HBOT'?

 

It might help with all of the above providing him the best possible longterm outcome. She might want to talk with the Dr.'s about this possibility.

 

Here is a reputable center with a list of conditions it can help. There are great centers throughout the US but wanted to provide you with one that I know is widely respected in our area for some perspective. You might also just call them. It can be good for both viruses and bacterial infection.

 

http://www.bayareahyperbarics.com

Edited September 28, 2014 by sf_mom

[stacestar]

thanks sf_mom for mentioning that idea of hyperbaric therapy. I've heard of it, but am not too familiar with it. I'll definitely pass this info along. Thank you for the link to one that is known to have a good reputation too; that makes it easier to tell her about it, knowing it is well-respected. Thank you!

 

I'm going to give them a call tomorrow and mention this situation. Thanks!

[LNN]

This Time Magazine article on Tumeric's neuro-regenerative properties might be of interest http://time.com/3442195/this-curry-spice-might-help-the-brain-heal-itself/?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+time%2Ftopstories+%28TIME%3A+Top+Stories%29

 

Many on the forum use tumeric in the form of Enhansa by Lee Silsby http://leesilsby.com/enhansa-homepage but you can also get forms of tumeric OTC.

High doses of Omega 3s can also help with excessive brain inflammation and CoQ10 is known to help restire the myelin sheath around nerves.

[rowingmom]

I know this might be a far stretch, but was he exposed to pesticides?

 

http://www.ageofautism.com/2014/02/polio-like-cluster-in-california-has-eerie-echoes.html#more

 

http://www.ageofautism.com/2011/09/the-age-of-polio-how-an-old-virus-and-new-toxins-triggered-a-man-made-epidemic-1.html

[stacestar]

llm,

thanks for those new ideas. I'm taking note of everything and will pass it all along. At this point, everything needs to be considered. The typical treatments haven't worked. I pray that they are open to alternative ideas. I know as a parent I would be, and I think my cousin will be too.

 

hi rowing mom, thanks for those links. I had seen the first article/blog about a week ago (or less) when I was searching some things online. It's good information (frightening actually), and I learned some ideas too from some of the comments section of it too. I think that's where I read about Dr. Klenner and vitamin C IV therapy, and also someone mentioning that LDN had helped her husband, someone else mentioning to get a good llmd (I think they should, even if not lyme, b/c those dr.s are usually open-minded to alternative treatment ideas, and usually think more broadly than nonllmd's in my opinion.

 

I'll have to read through the other article this evening when I have a little more time.

 

As far as if he's been exposed to pesticides, I suppose so, in the way that we all have, but I don't know if he's experienced any out of the ordinary pesticide exposures or not.

 

But definitely something is different here. definitely. If it was JUST this virus, then why aren't all the children (thousands of them) experiencing paralysis? I pray answers are found.

 

I think my cousin is still going through with the IGenex lyme test. (I'm praying this news of other children doesn't change her mind.) personally, you never know...with as rampant as borrelia is, perhaps there's an underlying tick borne infection and this entero in the mix, and the immune system couldn't handle things anymore. I don't know. all avenues need to be explored for sure.

 

I'll read through those links again. I can't remember what advice they offered in the blog itself.

 

Thank you!

[Jgoodall08]

Praying for answers and for a cure

[nicklemama]

Has the CDC been contact to see if one of their epidemiologists can make a connection with either the CO or CA cases? I think that needs to be done so any successful treatments will be shared if this is the same illness.

[911RN]

This case sounds very complicated. I would hesitate to offer any opinion, however, I had a co worker that just went through something similar last winter with her husband. He had paralysis after a viral illness. He had Transverse Mylitis. This can happen to adults and children. Causes paralysis, demylination, inflammation of spinal cord and all the things you have been mentioning. Here is link:

 

http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm