[Healthgirl]

Sorry for my confusing typing and poor grammar. Kids are doing the karaoke machine right now I am having sensory overload.

Today I went to the local neurologist who sent me to the big city docs because he couldn't figure out what was wrong with me. I liked him especially because he knew something was definitely very wrong but didn't know what it was vs some horror stories of people having been told they had anxiety issues.

I went to him because I need someone close by for pain management and also because now that we know what it is, I don't think I need to travel every few months for an examination unless I have an extreme relapse. Besides the fact that even the top neurologists can't figure out what the cause is...

He asked why no one as tried IVIG. I told him that the doctors I asked about it said there are risks and because I don't have concrete findings of autoimmunity besides high ANA, and borderline lip biopsy.

My neuromusular dr that I settled with does not give me the option for IVIG. He thinks I am "too healthy" to mess with despite my misery. He also thinks there is still a chance for spontaneous recovery or a major lessening of symptoms.


He asked if I mind if he reviews all of my paper work and notes to which I said "Mind? Please do!!!
He is going to do some research and work to try to push my insurance for IVIG 4 day infusion and that he absolutely loves the treatment and has had good results from it. He tells me the side effects are low. I explained to him that my daughters are having the same vascular rash and that they all appeared with in weeks of each other. He said that doesn't rule out autoimmune problems and that something could have triggered all of us. I get that, but my husband does not have my genes and he has been having mild symptoms as well.

Interesting and a lot to think about.
What would you do?

Open to any and all thoughts on this.

[baba222]

Originally Posted by Healthgirl

Sorry for my confusing typing and poor grammar. Kids are doing the karaoke machine right now I am having sensory overload.

Today I went to the local neurologist who sent me to the big city docs because he couldn't figure out what was wrong with me. I liked him especially because he knew something was definitely very wrong but didn't know what it was vs some horror stories of people having been told they had anxiety issues.

I went to him because I need someone close by for pain management and also because now that we know what it is, I don't think I need to travel every few months for an examination unless I have an extreme relapse. Besides the fact that even the top neurologists can't figure out what the cause is...

He asked why no one as tried IVIG. I told him that the doctors I asked about it said there are risks and because I don't have concrete findings of autoimmunity besides high ANA, and borderline lip biopsy.

My neuromusular dr that I settled with does not give me the option for IVIG. He thinks I am "too healthy" to mess with despite my misery. He also thinks there is still a chance for spontaneous recovery or a major lessening of symptoms.


He asked if I mind if he reviews all of my paper work and notes to which I said "Mind? Please do!!!
He is going to do some research and work to try to push my insurance for IVIG 4 day infusion and that he absolutely loves the treatment and has had good results from it. He tells me the side effects are low. I explained to him that my daughters are having the same vascular rash and that they all appeared with in weeks of each other. He said that doesn't rule out autoimmune problems and that something could have triggered all of us. I get that, but my husband does not have my genes and he has been having mild symptoms as well.

Interesting and a lot to think about.
What would you do?

Open to any and all thoughts on this.

Hope the research finds some answers for you and your family.

[icelander]

Originally Posted by Healthgirl

Sorry for my confusing typing and poor grammar. Kids are doing the karaoke machine right now I am having sensory overload.

Today I went to the local neurologist who sent me to the big city docs because he couldn't figure out what was wrong with me. I liked him especially because he knew something was definitely very wrong but didn't know what it was vs some horror stories of people having been told they had anxiety issues.

I went to him because I need someone close by for pain management and also because now that we know what it is, I don't think I need to travel every few months for an examination unless I have an extreme relapse. Besides the fact that even the top neurologists can't figure out what the cause is...

He asked why no one as tried IVIG. I told him that the doctors I asked about it said there are risks and because I don't have concrete findings of autoimmunity besides high ANA, and borderline lip biopsy.

My neuromusular dr that I settled with does not give me the option for IVIG. He thinks I am "too healthy" to mess with despite my misery. He also thinks there is still a chance for spontaneous recovery or a major lessening of symptoms.


He asked if I mind if he reviews all of my paper work and notes to which I said "Mind? Please do!!!
He is going to do some research and work to try to push my insurance for IVIG 4 day infusion and that he absolutely loves the treatment and has had good results from it. He tells me the side effects are low. I explained to him that my daughters are having the same vascular rash and that they all appeared with in weeks of each other. He said that doesn't rule out autoimmune problems and that something could have triggered all of us. I get that, but my husband does not have my genes and he has been having mild symptoms as well.

Interesting and a lot to think about.
What would you do?

Open to any and all thoughts on this.

All of you at the same time? Sounds like a possible environmental cause?

[beatle]

I am curious how your symptoms are when you are on vacation or away from home for extended periods. Any changes?

[Healthgirl]

Originally Posted by beatle

I am curious how your symptoms are when you are on vacation or away from home for extended periods. Any changes?

So far we have been away twice for 7 days at a time since it went body wide. I don't think it is long enough to make a difference.
I have ups and downs even at home though so I just don't know.
We were just away and in the middle of the week my daughter and I were sitting in the sun talking and we both looked down and saw the vascular rash. I was hoping it wouldn't happen when we were away. But then I think to myself, I have significant damage to my nerves. There is no way I could expect that being away from the possible toxin for a few days could cause instantaneous healing.... so I just don't know.

[madisongrrl]

Originally Posted by Healthgirl

There is no way I could expect that being away from the possible toxin for a few days could cause instantaneous healing.... so I just don't know.

If this were due to toxic mold exposure, you might not feel better since your neuropathy is more systemic and advanced (it will probably be a good amount of time before you feel better). You would think that others in your household might feel a little bit better since they are not as symptomatic as you. Also, if this were due to toxic mold, everyone in your house would likely not be impacted....at least that is what some doctors say they see clinically.

I hope you still have tick borne disease on the table as one of the possible causes, given that you live in an endemic area. The hard part of this whole tick born conundrum, is how to treat it. There is no agreement on that at all. I've been on Pub Med quite a bit and it is so confusing; too many scientific egos in that game.

I do follow the blog of one lyme literate doctor who seems like a pretty sharp guy. I think he actually even does a punch biopsy in his office because he does see neuropathy in his patients. I really haven't seen this talked about in many places. Here is the link, if you are interested.

http://lymemd.blogspot.com/2013/04/p...mmon-lyme.html

Are you still pondering IVIG? I don't have much knowledge about it, however there are many good posts in the archives on this message board. I think if it was offered to me at this point, I would probably take it.

[Neuroproblem]

Originally Posted by Healthgirl

So far we have been away twice for 7 days at a time since it went body wide. I don't think it is long enough to make a difference.
I have ups and downs even at home though so I just don't know.
We were just away and in the middle of the week my daughter and I were sitting in the sun talking and we both looked down and saw the vascular rash. I was hoping it wouldn't happen when we were away. But then I think to myself, I have significant damage to my nerves. There is no way I could expect that being away from the possible toxin for a few days could cause instantaneous healing.... so I just don't know.

If mold was the problem, you would be feeling other effects, such as allergic reactions, nosebleeds heaches.

[mrsD]

Originally Posted by Healthgirl

So far we have been away twice for 7 days at a time since it went body wide. I don't think it is long enough to make a difference.
I have ups and downs even at home though so I just don't know.
We were just away and in the middle of the week my daughter and I were sitting in the sun talking and we both looked down and saw the vascular rash. I was hoping it wouldn't happen when we were away. But then I think to myself, I have significant damage to my nerves. There is no way I could expect that being away from the possible toxin for a few days could cause instantaneous healing.... so I just don't know.

I had a thought about you last night. Going back to your low copper tests. Copper will go down when zinc levels are high.
Zinc is common in many dandruff shampoos....There have been links to zinc in shampoos being absorbed systemically.

Do you all use the same shampoo, and does it contain zinc?
Do you use a selenium shampoo? This in some people will cause PN symptoms if used too much or too often.
Pyrethrins also can cause long term toxicity issues. This was just in the media.

Also did your family and you ever use a lice treatment, or scabies treatment? Kids bring home these parasites from school, movie theaters and sleep overs. Sometimes a whole family is treated when these critters are found.

[Healthgirl]

Originally Posted by mrsD

I had a thought about you last night. Going back to your low copper tests. Copper will go down when zinc levels are high.
Zinc is common in many dandruff shampoos....There have been links to zinc in shampoos being absorbed systemically.

Do you all use the same shampoo, and does it contain zinc?
Do you use a selenium shampoo? This in some people will cause PN symptoms if used too much or too often.
Pyrethrins also can cause long term toxicity issues. This was just in the media.

Also did your family and you ever use a lice treatment, or scabies treatment? Kids bring home these parasites from school, movie theaters and sleep overs. Sometimes a whole family is treated when these critters are found.

Thanks for that Mrs D.
You are so smart!
We don't and haven't used any zinc products and I don't sup with it as I am aware of how it can deplete copper. It's funny that you know this, but NOT one doctor has asked me about it and they all see my labs of copper deficiency. I also am very careful as I'm building my copper back up to keep getting my zinc checked as well to make sure it looks good.
My newest thoughts are on molybdenum and the ways that works with the other minerals in the body. As miserable as all of this is, I find it wildly interesting.