[franklin76]

Hi all,

Wanted to post my latest update and see if anyone has any thoughts. I have had my PN since March/April of this year. Developed sort of rapidly and has just stayed with me and pretty much non-length dependent with ebb and flow of symptoms. All testing had come back normal with the exception of a mild copper deficiency and neutropenia (consistently low neutrophils). I have been doing oral supplementation of copper as there is some connection between copper deficiency and neutropenia as well as PN. Needless to say despite the doses, it appears my body has a challenge absorbing copper so my levels remain low. Well I just came back from the immunologist who ran a whole bunch of new autoimmune tests and he showed that I was high on GD1a Antibodies and GQ1b antibodies which are suggestive of an autoimmune process. When I google these markers, it appears they are often tied to Guillan Barre Syndrome. He said these findings could indicate that I would respond well to IVIG treatment/gammaglobulin therapy which serves to neutralize the overactivity of these antibodies. Another doctor(hematologist) believes I should be trying an IV for copper to see if this improves my neutropenia. I am at a crossroads for treatment and no clue which direction to go. Both are time consuming and have their hurdles with insurance (particularly IVIG). Curious what folks think? Have any others had these auto immune markers in their panels. Welcome any and all reactions from the group!

[Ragtop262]

You indicated that your copper deficiency was only "mild". Seems kind of strange that a mild deficiency would cause such a major issue, and require IV supplementation. Still, it would seem that the copper IV would be a more conservative first step, especially if your symptoms are not severe. IViG seems to carry some significant potential side effects.

Maybe Mrs. D will come along and add some additional knowledge on why your copper might be low and how to bring it back up.

[franklin76]

Agreed - not optimistic that copper IV will change the picture much but to your point it is lower risk and we will likely know if hematologically it improves the neutropenia at least. Also, in general, I am learning there is very little research related to copper and copper deficiency. As a result, not many doctors have a grasp on what its function is and what the consequences of having a persistently low level over a long period of time could have led to. All that said, the autoimmune process is a more likely cause of this in my opinion or perhaps they are all inter-related. Who knows?

[Marlene]

IMO, you do need to fix the copper issue since you have both hematological and CNS issue. Restoring copper can reverse the neutropenia but may not reverse the neurological damage. But it should halt further progression.

Figuring out the reason for the low copper may be necessary. It could be a metabolic issue that's genetic. If you cannot absorb enough via diet/supplements, IV may very well be necessary. I will look for the link on another website dedicated to bone marrow failure related to copper.

Are your vitamin D, zinc, b12, folate and iron OK?

[mrsD]

Here is a detailed scientific monograph on copper...

http://lpi.oregonstate.edu/mic/minerals/copper

Perhaps getting it from food would be more successful?
Perhaps, if you use an acid blocking drug, you may not be absorbing it normally.

[franklin76]

[QUOTE=Marlene;1178724]IMO, you do need to fix the copper issue since you have both hematological and CNS issue. Restoring copper can reverse the neutropenia but may not reverse the neurological damage. But it should halt further progression.

Figuring out the reason for the low copper may be necessary. It could be a metabolic issue that's genetic. If you cannot absorb enough via diet/supplements, IV may very well be necessary. I will look for the link on another website dedicated to bone marrow failure related to copper.

Are your vitamin D, zinc, b12, folate and iron OK?
Yes - interestingly all of these are well within normal limits. I suppose we may never know why my copper is off but seems like it does make sense and should be reasonably low risk to do the IV copper to see if it fixes the hematology. THANKS Marlene!

[franklin76]

Originally Posted by mrsD

Here is a detailed scientific monograph on copper...

http://lpi.oregonstate.edu/mic/minerals/copper

Perhaps getting it from food would be more successful?
Perhaps, if you use an acid blocking drug, you may not be absorbing it normally.

Thanks. No acid blockers. Only drugs are/have been nortryptiline to help the PN and the copper supplements. I am taking a genetic test to see if I am missing a copper transport protein but pretty odd that I would go my entire 39 years without this cropping up and suddenly it is causing all these symptoms.

[Marlene]

http://ajcp.ascpjournals.org/content/132/2/191.full

http://www.bloodjournal.org/content/...o-checked=true

[franklin76]

Originally Posted by Marlene

http://ajcp.ascpjournals.org/content/132/2/191.full

http://www.bloodjournal.org/content/...o-checked=true

Thanks - I had read a few of these cases as well. Interestingly many of these relate to patients who have had gastric bypass surgeries as otherwise it is so rare! Appreciate the postings Marlene.

[Healthgirl]

As you know I am also copper deficient with no other cause found and autoimmunity is suspected.
My ferritin is also below the normal range.
I have been supplementing since February with 2-4 mg Copper a day and just had my levels rechecked again. They will go in to the lowest of the normal range, but won't budge from there. My dr. said I could take a higher dose.
I have read about people with malabsorption syndromes and that the metals get pushed into the organs and brains so I do think about that, but that's not to say I wouldn't try a few infusions if someone would let me- especially since I don't think I could have that issue after so many years of being healthy.

Also *It's been over a year since I've had gluten, so I don't believe it is celiac.
If I had doctors willing to do the infusion or the IVIG, I'd go for the copper first and IVIG last.