Update on our nerves
 

I heard back from the Mount Sinai environmental team. They cannot figure it out. :(
That was my last hope from the medical world.

The newest complaints are from my little one (who is also getting the vascular rash from the sun). She said her foot felt "tingly, pokey, and hurt". It went away. Now her thigh muscle is hurting.Her skin is looking even more transparent and veins more prominent.

My oldest who has had more symptoms is also having the skin changes and vascular rash. Her newest incident was when she got home from school last week. Her feet were numb and burning. I told her to take her shoes off and put her feet up and they returned to normal. They were ok all weekend and thankfully her symptoms are intermittent and she is basically ok.
My husband had 2 more occurrences of random tingling in legs and numb heels, some brain fog, noise sensitivity.

Me .....well most of you know about me. For some reason I am severely affected with autonomic neuropathy, pain, weakness, shakiness, etc. I have some days better than others. The pain comes in bursts during the day but I can definitely live my life now in a modified way. The nights can be terribly painful. Once or twice a week I get a good solid nights sleep and a reprieve, but most nights are gross.

The only clue I have to this is that 3 of us our having a neurological vascular issue. So, it isn't just me coming down with an autoimmune disease. There is some exposure that happened or is happening to us. Maybe I have something autoimmune underlying which is why it has affected me so badly, but there is definitely something else.

I am almost certain it isn't lyme at this point. Too coincidental that my children and I all began the rash with in the same 2 months.

We threw out our water cooler and got a brand new one in case it was harboring bacteria. (thanks to Mrs. D- who mentioned drinking water:))
We checked some swabs of dust for mold and they came up negative. I know how tricky mold is so it isn't ruled out.

That leaves outgassing from new wood floors or remodels.

Are you taking benfotiamine? This will help if you are getting formaldehyde poisoning.

I have read on the net that some flooring materials come from China and outgas quite a bit of solvent vapors. I have seen some complaints about this.

Did you ever get the DNA methylation testing? I'd do that next.

I still think the car may be a source of something.

Thanks Mrs D!
We just got a new car a month ago. The last one was a brand new 2 year lease.

[QUOTE=mrsD;1169547]That leaves outgassing from new wood floors or remodels.

Are you taking benfotiamine? This will help if you are getting formaldehyde poisoning.

I have read on the net that some flooring materials come from China and outgas quite a bit of solvent vapors. I have seen some complaints about this.

Did you ever get the DNA methylation testing? I'd do that next.

I still think the car may be a source of something.[/QUOT

There are more lyme strains then burgdorfiri but of You sure about it that it must be something else

I'm sorry that you guys can't get this figured out. I've been pouring over all the lyme disease research for a few weeks now (my appointment is set for next month).

I haven't really found much credible info on livedo, until this weekend. I know lyme is off the table, but I'll throw this resource out to you, in case you want to listen.

This doctor is a Rheumy and his name is Dr. Robert Mozayeni; he specializes in neuro-vascular diseases. In this interview he talks about tick-borne inflammation in the vascular system that impacts the small vessels and he sees it manifested as livedo and other neurological symptoms. His interview starts 20 minutes in.

http://www.peoplespharmacy.com/2015/...orne-diseases/

I hope you get this figured out for your kiddos.

I almost forgot to add. He is published in the CDCs journal Emerging Infectious Diseases.

http://www.ncbi.nlm.nih.gov/pubmed/22516098

Click through and free full text article is on the right.