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Old 07-04-2015, 12:21 PM #1
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Default Now I think this is a microbial illness

Now I am 100% sure this is more than a coincidence. At this point there have been too many coincidences.

My 12 year old has been complaining of foot pain for 2 months on and off.

She has been having headaches several times a week for about 6 months. Her anxiety is terrible, and she has been suffering from episodes of insomnia for a few months, which she never had before.

She has woken up with pulled neck muscles about 5 times in the past few months.

All symptoms that were the beginning of my neuropathy. I took her to the per. about the headaches and asked for a full work up with celiac test and ferritin levels. All came ok.
I was relieved about it and just thought it was all possibly hormonal/ puberty, and couldn't be related to what is happening to me.

Well now I saw with my own eyes that this is no coincidence.


Yesterday she broke out in the same livedo like rash from the sun. She is has dark Italian skin and has never EVER had a reaction or even a burn from the sun. Her right toe is hurting and when she tries to lift it she describes a vibrating painful sensation. She keeps stubbing that toe because she says her foot won't let her lift it properly.

I don't know what to do.
I have had all the blood work, MRI's, spinal tap, that any doctor can think of and it is idiopathic. How can it be that my 12 year old girl is coming down with the same illness with in 8 months of each other?
I am desperately trying to figure out what to do.
It must be something microbial. What else could it be? Please any ideas, thoughts, direction?
I am going to have her biopsied for sfn, but then what? It will probably be positive. This has to bring more clues to treatment since it is affecting two people at the same time in the same family.
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Old 07-04-2015, 01:08 PM #2
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It must be something microbial. What else could it be? Please any ideas, thoughts, direction?
I am going to have her biopsied for sfn, but then what? It will probably be positive. This has to bring more clues to treatment since it is affecting two people at the same time in the same family.
It's one thing for you to have all these AN and SFN issues, but it has to be so much more frustrating and scary if your child is having symptoms as well.

I think you are correct; this isn't a coincidence. It's potentially something in your environment. My few thoughts go to tick-borne disease and mold. Maybe even drinking water? How long have you owned your home? Any obvious places for mold? How about lead? Did you ever have your home radon levels tested?
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Old 07-04-2015, 07:29 PM #3
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It's one thing for you to have all these AN and SFN issues, but it has to be so much more frustrating and scary if your child is having symptoms as well.

I think you are correct; this isn't a coincidence. It's potentially something in your environment. My few thoughts go to tick-borne disease and mold. Maybe even drinking water? How long have you owned your home? Any obvious places for mold? How about lead? Did you ever have your home radon levels tested?
We have lived in our house for 10 years. We drink Poland spring water- I won't rule that out though. I haven't had the radon tested since the inspection of when we purchased the house.
No doctor checked for heavy metals so I had it done myself and it was ok.

I was thinking tick borne when it came to me. Now that she is having symptoms I am thinking environmental. I am really going to look into the mold. I have never seen any besides in an old refrigerator all along the old gaskets that we keep in our garage. Maybe the spores get into the air? I don't know that much about mold. I did call a mold testing company at one point and asked if someone could have toxic mold in their house and not know. They said that I would have probably have come across it somewhere in the house before, so I didnt pursue it. I am going to now.
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Old 07-04-2015, 09:11 PM #4
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I don't know that much about mold. I did call a mold testing company at one point and asked if someone could have toxic mold in their house and not know. They said that I would have probably have come across it somewhere in the house before, so I didnt pursue it. I am going to now.
Yeah, I don't know that much about mold either. It's one of the avenues I need to dig into because I do have a mold problem in my bathroom that needs to be addressed.

I've recently learned that mold testing companies really just look at the mold counts. This is more related to mold allergies. The toxic molds are cause problems are different and the testing is unique (and expensive).

Good luck and let us know what you find out.
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Old 07-05-2015, 12:44 AM #5
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Hi Healthgirl

Here's a couple of links to sites with info on mold:

http://www.building.govt.nz/ws-mould-info-sheet

http://earthquakeservices.co.nz/docs/blackmold.pdf

They are both related to NZ as toxic mold became a big problem in houses damaged by the major earthquakes in the city of Christchurch 5 years ago. It is however the same types of mold that can be found in other countries.
From what you've said it doesn't sound like your house has a mold problem unless maybe it's hidden in wall cavities, attic or basement.
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Old 07-04-2015, 01:08 PM #6
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I think if I were in your situation and believing what you believe, I would head back to my integrative medicine doc and ask her to test for toxins.

Have you been to one yet? I didn't have success with mine, but she tried her best with a variety of tests trying to find something abnormal.

If you have trouble finding a doc in your area, you could try this route. This is one of the labs that I tested with for something (can't remember what). <edit: I had their NutrEval test done). I do see from their list they can test for heavy metal toxins and the such. I don't know about things like mold.

Providing contact info at this link will, in theory, provide you with a list of physicians in your area who use them for diagnostic testing.

https://www.gdx.net/patients/practitioner-directory

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Old 07-04-2015, 01:17 PM #7
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I don't know much about mold either. This podcast was a good start for me and described the best tests and treatments for those suffering from mold exposure.

http://undergroundwellness.com/podca...mold-exposure/

I also saw a functional medicine doctor. She said that we could test for things like lyme/tick borne disease, heavy metals, mold etc. While it is expensive, it is nice to have someone to turn to for help after mainstream neurology doesn't know what to do with you.
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Old 07-04-2015, 03:27 PM #8
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Hi Healthgirl

Sorry to hear your daughter is now also unwell. From your post I'm guessing you had a confirmed SFN diagnosis but no definite cause was found. As others who posted here have said it would tend to suggest an environmental cause.

I've done a quick review of some of the sites I bookmarked while searching for info on PN. Here's a couple that have some info on toxins that cause neuropathy. Some of the sites are pretty comprehensive and you may need to scroll down to find the sections on toxin neuropathy. Doing a further search on individual toxins may give an indication of whether you've had exposure to them or not.

http://www.clevelandclinicmeded.com/...hy/Default.htm

http://www.ninds.nih.gov/disorders/p...neuropathy.htm

One thing I did come across is that some insecticides can cause neuropathy - was your house fumigated prior to the symptoms appearing? Also have you had new carpet installed or other interior decorating? Sorry I haven't found anything specific on mold induced illness. Will keep looking as it is a topic that's been in the news media in my country (NZ).

All the best in your search for getting answers.
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Old 07-05-2015, 08:04 AM #9
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Hi Healthgirl

Sorry to hear your daughter is now also unwell. From your post I'm guessing you had a confirmed SFN diagnosis but no definite cause was found. As others who posted here have said it would tend to suggest an environmental cause.

I've done a quick review of some of the sites I bookmarked while searching for info on PN. Here's a couple that have some info on toxins that cause neuropathy. Some of the sites are pretty comprehensive and you may need to scroll down to find the sections on toxin neuropathy. Doing a further search on individual toxins may give an indication of whether you've had exposure to them or not.

http://www.clevelandclinicmeded.com/...hy/Default.htm

http://www.ninds.nih.gov/disorders/p...neuropathy.htm

One thing I did come across is that some insecticides can cause neuropathy - was your house fumigated prior to the symptoms appearing? Also have you had new carpet installed or other interior decorating? Sorry I haven't found anything specific on mold induced illness. Will keep looking as it is a topic that's been in the news media in my country (NZ).

All the best in your search for getting answers.
No new carpets or furniture. We have a new addition that we put on the house about 4 years ago, but we can't figure out if there could be anything linked to that.

Our house is at a lower point in the neighborhood where a lot of water gathers during rainy days. Our basement doesn't get wet but I wonder if enough moisture gathers to keep spores alive that can come in?? thinking thinking
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Old 07-05-2015, 08:17 AM #10
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I wonder.... I don't recall if you were tested for West Nile Virus?

I think you can look up where you live for stats on this. Our area was at one time having high infection rates, so high that our city started treating the storm drains with a chemical to kill mosquitos.
They dumped the stuff in and spray painted the grill of the drain each spring.

In the past I met a woman not far from me who became seriously disabled from West Nile. She could no longer work, and her memory was impaired from the encephalitis it caused. So while the CDC says that reaction is rare, it might not be so rare after all.
Most of our crows died from this. And today, we rarely see crows, at all. They used to be common here. So if you see an obvious shift in certain bird populations, you might look into West Nile.

But certainly-- your daughter being ill now with similar symptoms is very concerning. I hope you get to the bottom of this soon.
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