For anyone who is following my situation....
 

This is going to blow your mind!
The other day when sitting outside..... this happened to my youngest child's leg.

Now it is 3 of us.

What is going on?
I won't curse, but can I appropriately say "wtf"?

Have you checked for lyme symptomes,i now there are several strains of Borrelia species.

I thought maybe lyme with me, then maybe with my other child, but now three of us with the same rash in the sun. I'm thinking something environmental. So confusing.
They are ok, unlike me who is severely affected. I can only hope and pray it won't do to them what it did to me.

have you checked into hereditary skin rashes from sun exposure? I'm just thinking where you all three have it, it may be something hereditary.

We have never had it in our lives until this summer. It is just bizarre! I'm crazy trying to figure this out. It goes away when we get out of the sun in about 20-30 min and doesn't occur every time.

It makes sense that if it was a toxin it would occur whenever you were outside. Where it is only happening when you are in the sun, maybe google skin rashes from sun exposure and see if you can find something there.

Hi healthgirl

Just a maybe: Photosensitivity Dermatitis:

http://dermnetnz.org/reactions/photosensitivity.html

and another one:

http://umm.edu/health/medical/altmed...hotodermatitis

I checked out everything I could find and went to the derm. He said it is levido, but can't figure out what is causing it in all of us. There is no itchiness or lesions. It is below the skin, so its not really like a regular rash.
It happens anywhere in the sun where ever.

Thanks Blues fan,
It isn't dermatitis but interestingly enough, as I was in the waiting room under a fluorescent light the other day, I was putting my palm of my hand facing down and then up. Every time I faced it up toward the light the skin mottled right before my eyes. I thought... nah... it can't be- but according to this link, fluorescent lights can cause the photosensitive reaction.
Crazy!
I'll point that out to the dr.
Now if they could just find out why our bodies are suddenly responding this way. :confused:

Link
 

Here is another:

http://www.cape.ca/children/derm3.html

Not sure if that helps.

Sorry, I don't know about all your workup.

:grouphug:

You've typed levido, but do you mean Livedo?

Livedo Reticularis looked a little similar although there are several different types of Livedo and looking through the information on Livedo, they're usually caused by some serious underlying conditions and I would doubt that 3 of you in same family of varying ages would suddenly develop that plus some of the info about the benign form of Livedo actually says it resolves with heat... and that appears to be the opposite of what you're all experiencing.

There is another condition called _ Erythema ab igne _ that appears to be more heat related than Livedo.... but heck, I'm not a doctor so it's all just guess work. It is associated with chronic exposure to infrared radiation or low levels of heat.

It sounds as if it's related to your exposure to the sun. Maybe you're all just really sensitive to UV radiation from the sun??

Are any of you anaemic? The skin in your photos looks very translucent. I remember seeing others you posted on another thread and skin looked translucent and pale there too.

Looks like Livedo Reticularis to me. Google images and see what you think.

It's funny that you mention translucent skin. I am sure that my skin has become translucent through out the course of this neuropathy. It is disturbing.
I thought the kids skin was looking a bit off as well.
I have low ferritin and copper deficiency which would account for the thinning skin. I'm trying to figure out what caused that deficiency. I am learning that some toxic exposures can complete with necessary minerals and it looks like I might be onto something.

Until this summer, none of us has ever had a photosensitive reaction. We don't burn. This is completely knew. My autonomic symptoms started just about 2 years ago, painful neuropathy started about 10 months ago and the rash started sometime in June. My kids started all this month.
If my 12 year old wasn't having neurological symptoms, I would think maybe the kids and I happened to have 2 separate issues going on, but she is having so many similar symptoms, so I can't help but think this is connected.

I looked at that erythema rash. It does look like it, but ours goes away with in 20 minutes when we cool off. I will bring it up to the dermatologist. Thanks for that!

Low copper raises a red flag when it comes to neurological issues. Iron, copper and zinc need to be in balance. How is your zinc?

Rare metabolic mutations can be involved in your body's ability to absorb and utilize copper. Unfortunately, restoring copper does not alway lead to improvement in symptoms but will stop further progression.

http://www.ajnr.org/content/27/10/2112.full

http://www.neurology.org/content/63/1/33

Hope you get this piece of the puzzle sorted out soon.

Well, time to become a detective...

Look at all the things you share... bug bites (mosquito and tick),
vaccines (did you all get flu shots?), water (have it tested,for heavy metals), airborne (formaldehyde outgassing in the house, mold spores, industrial fumes, second hand smoke), foods (arsenic in rice, too much green stuff (see the recent post here on oxalate excess), that awful Himalyan salt,
the stuff you wash your clothes in (get sensitive soaps).

One thing that is a big cause of photosensitive dermatitis is the blue green algae in water. Right now Northern Ohio is having another microcystin attack from Lake Erie in their municipal water supply. This invisible to the naked eye, organism sits on skin that was exposed to the water, and reacts with UV to form dermatitis. Many people where we live in summers, have had this reaction including me. Many are fishermen who get this on their hands and arms.

http://www.tpchd.org/environment/sur...cyanobacteria/

Search the internet for an environmental doctor...they have a website, that might be helpful. Or call your local hospital to see if they know of a doctor who specializes in toxins.
http://www.aaemonline.org/referral.php

Just to add to the list, floride treatments, playing in sprinklers by someone's house who did fertilize, pool chemicals, school vaccinations, excavation sites, old houses with lead pipes, old lead paint anywhere....
I used lead testing kits that I bought from home depot to check lead content of plates we were eating on and also the kids toys.

Oh no...Blue green algae, what's wrong with Himalyan salt?

I don't trust that salt.... I found a website listing all the minerals in it (from chemical analysis) and I don't think something like it coming from Pakistan is safe basically. That is just my opinion, though.

Blue green algae killed a couple of dogs in my neck of the woods. And it also made a child very sick. Not something you want to get into.

Exactly this could also be something to check,maybe its something genetic

We get that toxic blue green algae here too. I had to keep my last dog (Blue Heeler) out of the water especially during early spring. I'm lucky that the current dog hates water and goes so far as to step around puddles when on walks. He is a herding dog and apparently he didn't read the Australian Shepherd manual that says he is supposed to like water. :D

Wow Mrs D.


I just did a quick search on cyanobacteria. We go swimming every summer in lakes. I am very overwhelmed.
The only thing is that if we were all exposed at the same lake one year, it wouldn't match up with the symptoms starting with me in 2013 and the kids more recently. It makes me suspect a more chronic exposure.

It's making me think about the poland spring water cooler we have though. If we had one tainted 5 gallon jug it could have contaminated the cooler and we just keep drinking it??? No one would ever know. There could be many people affected and the link just hasn't been found because PN is so often idiopathic.
I am the one in this house who definitely drinks the most water. But.....when we go away for a week I don't get better? Just brainstorming out loud.

Maybe a gentic component, but there has to be a trigger for it to be happening to all of us at the same time.

:Good-Post:

Speaking of excavation sites; we built an addition onto our house 5 years ago. I wonder if it could have to do with that.

Also, we live in one of the lowest spots in the neighborhood. I often think it could be run off from everyone else's pesticides.

One has to CLEAN those dispenser coolers for the jugs ...

http://www.drinkmorewater.com/techno...n-water-cooler

I worked at a place once that never did (but I didn't know that until after I got sick and asked). I only had one drink from that cooler and was sick within 2 hrs with a massive headache! (and I rarely if ever get headaches so I listen to myself when I do). If your dispenser is in sunlight for part of the day, the algae will grow in it.

I put bottled water in the cats dispenser upNorth (which I clean out with bleach each season) and algae grows in it anyway. I think it is coming from the bottled water.

Take a clean dish and put some of your water in it on a window sill and see if algae grows in it. That would tell you not to use that water even if new.

The algae blooms vary from year to year...some heavy and some light. They are stimulated by phosphate run off from agriculture and lawns and gardening. If you delve deeply into the online sites about this subject you will find brain damage and other horrible things besides skin reactions. The blooms upNorth where we are start in late July and August, when the northern cold/cool water warms up.

Some of the local UPers upNorth, rinse off with a very dilute bleach solution after going swimming in the lake.

Boiling does not help... it actually bursts the algae and forces a larger dump of the toxin, than would be present if the cells remained intact.

whoa! ok. I just filled up a dish and put it on the window sill. I am the one who boils this stuff for tea all day, so that could account for how much worse I am. Could it be this simple? How miraculous that would be for my hurting life.

I am very interested in this for my yard as well. As I said in one of the posts above; we live in one of the lowest houses on the neighborhood. There is actually a drain at the back of my yard that was built by the town in the 70's to have somewhere for the water to go. The kids and I don't wear shoes for 5-6 months of the year outside.
SO, I'm thinking about the possibility of pesticide ridden bacteria that could be thriving in my backyard. Possibly? And because we are the wild non shoe wearing people on the street, it might make sense that others aren't sick? I am caught in a whirlwind of thoughts. Could you imagine if this crisis is solved on Neurotalk?

I am not sure what "pesticide ridden bacteria" could be.
Pesticides are chemicals designed to kill insects and some plant diseases. Pesticides themselves are mostly poisons to animals. But pesticides are not alive.

But molds, and algae yes. These simple organisms may infect people and cause illness. Molds actually can live in people. The algae tend to dump toxins into the bodies of mammals, and these toxins are byproducts of their metabolisms.

I have seen algae mats upNorth where water is shallow. You might have those. They are dark green and sometimes look even black. They cover the bottom of the pool as a rule, but when thinner they float around and may wash up with waves.

I think you might reconsider so much barefoot activity and opt for water shoes, crocs etc.

Pesticides kill insects. And bacteria are everywhere. Algae are neither.
https://en.wikipedia.org/wiki/Algae
Algae can be considered to be primative plants.

https://en.wikipedia.org/wiki/Bacteria
Bacteria are considered to be primative animals.
If pathogenic they can live inside people and cause infections.

cyanobacteria: These are bacteria with photosynthetic ability. Often considered the first forms of life on the evolving earth in the beginning of this planet.
https://en.wikipedia.org/wiki/Cyanobacteria
It is these toxins the cyanobacteria produce that are toxic to animals and people.

I think I read somewhere that the pesticides cause certain toxic bacterias to thrive. That's what I meant. I have to find that article again.

I think you asked if anyone had heavy metals testing. I did. A 24 hour urine is preferred over a blood test. I was within normal limits. I did another 24 hour and got the specifics from Nutreval. It was their heavy metal and mineral. I had lead, mercury, and others. It revealed even the tin which I was using to cook and strain vegetables. Not large enough levels to cause concern to doctors. Anyways, its a very sensitive test. That's another thing oxalates do is store heavy metals in your tissue. Mercury has a 20 year half life. There are no safe levels for mercury. I've been doing saunas because I want it out of me. There are heavy metals in some fertilizers, pesticides and fungicides. Especially farms. So while no one believes, including me, it's the source of my acute relapsing neuropathy, I have gained improvements with low oxalate diet and saunas. Also important, while on the subject is to correct mineral deficiencies because your body will pull the toxic ones if it has to from food , like seafood, because the body needs minerals.

Nope, it was that lawn fertilizer that so many people use, and it wasn't bacteria. I guess its fungus and algae. Maybe mold?

I am confusing that with the info on pesticides that create antibiotic resistant types of microbes.

We stay far away from all that stuff for our yard, but being at a low point, I am sure that we absorb a lot of what the neighbors use into our soil and possibly due to that we might have more mold spores, and maybe dangerous microbes around.

Well pesticides are designed to kill insects, that eat crops or plants, And breed resistance in these insects. Antibiotics are for bacteria.

Here is an explanation of what pesticides are:

https://en.wikipedia.org/wiki/Pesticide

Antibiotics are used in living animals and humans to kill pathogens inside the body. They are highly specific and if overused in animal husbandry or in people they lend to the target bacteria mutating and becoming resistant to them.

Yes, but pesticides and antibiotics are contributing to stronger mutated forms of bacteria.

I was confusing the lawn fertilizers that grow different types of microbes and calling it all bacteria when I was thinking "microbes".My brain is jumbled with information from an awesome class I just took on the microbiome. Very exciting stuff!



"Microbes"- NIH
http://www.niaid.nih.gov/topics/micr...s/default.aspx

Microbes are tiny organisms—too tiny to see without a microscope, yet they are abundant on Earth. They live everywhere—in air, soil, rock, and water. Some live happily in searing heat, while others thrive in freezing cold. Some microbes need oxygen to live, but others do not. These microscopic organisms are found in plants and animals as well as in the human body.

Some microbes cause disease in humans, plants, and animals. Others are essential for a healthy life, and we could not exist without them. Indeed, the relationship between microbes and humans is delicate and complex.

Most microbes belong to one of four major groups: bacteria, viruses, fungi, or protozoa. A common word for microbes that cause disease is "germs." Some people refer to disease-causing microbes as "bugs." "I've got the flu bug," for example, is a phrase you may hear during the wintertime to describe an influenza virus infection.

Since the 19th century, we have known microbes cause infectious diseases. Near the end of the 20th century, researchers began to learn that microbes also contribute to many chronic diseases and conditions. Mounting scientific evidence strongly links microbes to some forms of cancer, coronary artery disease, diabetes, multiple sclerosis, and chronic lung diseases.

Lawn fertilizers consist of Nitrogen, Phosphate and Potassium compounds that plants use to grow. In this case grass.
You will see on fertilizer labels 3 numbers... 12-12-12 (example--these numbers vary depending on the target use).
That is the strength of left to right Nitrogen, phosphate, and potassium. There are fertilizers that have pesticides mixed into them..
to kill weeds and insects that live below the soil. A common name for this type of fertilizer is "weed and feed".

Nitrogen is used to make green growth by plants. Phosphate is typically used for flowers and blooms. Potassium is used to make strong root systems.

The algae that we are discussing on this thread is predominately stimulated by phosphates.

When you quote a source from the net on NT you need to put in the link where you found it. A short quote + link is spelled out in our guidelines. The explanation and link of this copyright rule is in my siggie for convenience.

The microbiome is the new research in human medicine to help explain how the beneficial organisms in our GI tract and elsewhere...yes, they are everywhere, can be damaged by drugs and antibiotics and then the health of the person is shifted into a disease state.
It is exciting and may provide treatments to help many many people. But this microbiome does NOT include the blue green algae we are discussing on this thread. This algae cannot live and reproduce inside us, and when it dies, it releases toxins that our bodies are not equipped to deal with...these toxins attack cells of the nervous system, lining of the GI tract, skin and other organs like the liver and kidneys.

Hi Healthgirl. Do you live in an area where your neighbor's use Roundup? There are lots of dangerous side effects from this pesticide according to things I've read.

Round-up has been recently implicated in causing cancer. It is used to remove weeds and poison ivy and unwanted vegetation.

It is so toxic that you cannot grow anything on the ground after using it for months! It poisons the soil. (for at least 3 months, or longer).

https://www.organicconsumers.org/old...yphocancer.php

I have also seen a seminar on YouTube, discussing Round Up as a trigger for Autism.

Roundup is not included in regular lawn fertilizers. It is a stand alone product typically and applied in specific situations.

Thanks Mrs. D,
I edited the post and added the link. I thought it was ok that I put quotes and the source next to it.
Now I know I must put the link as well.

I live in a neighborhood that is filled with people who use what ever legal stuff you can purchase at Lowe's. Yes, I do know that some people around her use spray round up for weeds.
I know almost everyone uses the big bags of lawn fertilizer and pesticides and some people have their lawns maintained with what ever the professional landscapers use and then put the little caution flags out on the perimeters.
I'm sure this is the case in most neighborhoods though.

The good news is that my husbands legs and foot are completely back to normal. My daughter had a great weekend- no headaches, rashes, nervy type symptom complaints. Yesterday was a beautiful sunny day and they all were feeling great.

The bad news is that out of no where- I can't move my neck again. I haven't felt this bad since February.
The muscles are spasming and my nerves throughout my shoulders, neck, head and face are completely wigging out. I feel like my head, face, and neck are being squeezed. The brain fog is back and the pain is excruciating. I am having to take pain meds at the rate I did at the onset of this thing.

I don't understand this. I was able to move my neck again, drive, use my arms, and I was happy.
I can't figure out what happened to cause this. Last week I was doing better than I had been - since this started.
I went to bed, had a good nights sleep and then woke up like this on Saturday. It rapidly got worse every hour of the day and here I am Monday.

I thought we were onto something and going to find a solution to this madness. I was feeling quite positive that this mystery was going to be uncovered and solved. We are going on vacation and glad to be away from here for a while.



The only thing I can think of is that by the time I went to the doctor for my first symptoms, it was October 2013. It took me a month or two to go so it really started Aug- Sept. My severe nerve pain started last year in August and I wound up in the emergency room in Sept. Here I am in August again and having what could be a relapse.

so the link is August.