Is this neuropathy?

[Angel Bryan]

Hello. My nightmare started on January of 2024, I have been through all the usual symptoms which I know you are very familiar with. Some symptoms in particular were pins and needles in my left leg that one time moved to my upper left hand and an ocasional sharp pain inside my left leg that subsided the next day. This happened on two occasions.

Regardless of all of this, earlier this year I started improving and symptoms started going away, some returned every now and then but others were gone for good, which included the pins and needless on the leg and arm, however for the last week I have started feeling my left feet hot and now I am starting to feel it cold, this also includes anxiety and lightheadedness.

I am scared again and devastated to say the least, I fear this to be CIDP or Small Fiber Neuropathy which are autoimmune and I suspect one of them to be the case. I don't have weakness and haven't loss sensitivity yet but is still very distressing.

Has anyone else experienced the same? What could it be?

The only intervention that I did recently was a cycle of Rifaxamin with NAC, Nattokinase-Serrappetase and Saccharomyces Boulardii. I read that NAC can affect Zinc/Copper. I wonder if it's related.

 

[pamojja]

Could be neuropathy. Had in left sided too, after increasing too my pyridoxamin intake too high and too long. Decreasing again and supplementing instead pyridoxal form of vitamin B6 worked for ceasing the neuropathy after about 1 year again.

Neuropathy can be a sign of vitamin B6 deficiency and overdosing too. In my case, it occurred with the pyridoxamin form of vitamin B6 only.

 

[Zebra]

I read that NAC can affect Zinc/Copper. I wonder if it's related.

Hi!

During the early course of my ME/CFS (or whatever this is), both serum and urine tests were well below normal for copper multiple times (and I do not have Wilson's disease).

Because of this, two neurologists advised me to stop any zinc supplementation, which they told me drives down copper. They told me that copper deficiency can negatively impact your central and peripheral nervous system.

Maybe consider getting your fasting copper level checked?

And, if low, altering your supplements accordingly?

IMHO, if you had CIPD, your symptoms would be much more severe. Have you had a Nerve Conduction Study on the affected limbs to evaluate for neuropathy?

Best wishes to you!

 

[2Cor.12:19]

I fear this to be CIDP or Small Fiber Neuropathy which are autoimmune and I suspect one of them to be the case.

Hi @Angel Bryan - you didn’t mention whether you already have ME/CFS or if these new neurological symptoms are your only concern.

I have both ME/CFS and severe idiopathic axonal Polyneuropathy (large fiber) -have had both for decades. There are lots of causes for Peripheral neuropathy which can begin either slowly or fast. Typically though, it affects both sides fairly symmetrically. When only one side is involved, it could be something else. I wouldn’t worry yourself too much because there are so many things that can cause your symptoms . But I would definitely talk to the regular doctor about it and better yet, a neurologist if that’s an option.

ME/CFS can definitely cause nerve damage, and especially if it started with the Epstein Barr Virus, as was with my case.

Wishing you all the best.

 

[datadragon]

@Angel Bryan

Supplementation with high concentrations of the pyridoxine form only of Vitamin B6 competitively inhibits the active Pyridoxal 5' phosphate (P5P) form which actually leads to decreased vitamin B6 function rather than enhancing it. Also, Pyridoxine is shown to also be the toxic form of vitamin B6 so care to avoid higher doses.
https://pubmed.ncbi.nlm.nih.gov/28716455/
Vitamin B6 normally needs Zinc, Magnesium, and Vitamin B2 (flavin mononucleotide (FMN); also known as riboflavin-5’-phosphate) in the conversion to active B6 (P5P).

The ingredient citric acid may also add to some symptoms. This is not the natural in fruit but the added ingredient.

 

[datadragon]

@Zebra

zinc supplementation, which they told me drives down copper. They told me that copper deficiency can negatively impact your central and peripheral nervous system.

Ceruloplasmin is needed to make copper usable and requires zinc as a cofactor, so it would be only with severe excess of zinc all the time every day creating a true deficiency of copper intake to lessen zinc in that one case, rather than a deficiency of ceruloplasmin creating the deficiency of having no usable copper due to the low ceruloplasmin despite plenty of copper intake and its presence being the issue.
https://forums.phoenixrising.me/thr...per-but-also-side-effects.91503/#post-2452757

I would use this link to check serum copper and serum ceruloplasmin (the usable copper) after blood tests and can calculate free copper levels unbound to ceruloplasmin using this link but this is a spot check at the time of the test only. This does not reflect any long term accumulation in the tissues that may have also been going on.
https://web.archive.org/web/2021030...ients-families/lab-tracker-copper-calculator/

 

[Angel Bryan]

Could be neuropathy. Had in left sided too, after increasing too my pyridoxamin intake too high and too long. Decreasing again and supplementing instead pyridoxal form of vitamin B6 worked for ceasing the neuropathy after about 1 year again.

Neuropathy can be a sign of vitamin B6 deficiency and overdosing too. In my case, it occurred with the pyridoxamin form of vitamin B6 only.

I did started supplementing with B complex vitamins but only AFTER the neuropathy episode arise, which I don't think it had any effect at all. According to my OAT test I took on April, my B6 levels are low but whitin range.

You can see it here:

Hi!

During the early course of my ME/CFS (or whatever this is), both serum and urine tests were well below normal for copper multiple times (and I do not have Wilson's disease).

Because of this, two neurologists advised me to stop any zinc supplementation, which they told me drives down copper. They told me that copper deficiency can negatively impact your central and peripheral nervous system.

Maybe consider getting your fasting copper level checked?

And, if low, altering your supplements accordingly?

IMHO, if you had CIPD, your symptoms would be much more severe. Have you had a Nerve Conduction Study on the affected limbs to evaluate for neuropathy?

Best wishes to you!

Did you had neuropathy at any point and if so, raising your copper level fixed it?

I've also heard that the symptoms of CIDP are more dramatic but the chronic and unpredictable nature of whatever I have is what scares me.

Hi @Angel Bryan - you didn’t mention whether you already have ME/CFS or if these new neurological symptoms are your only concern.

I have both ME/CFS and severe idiopathic axonal Polyneuropathy (large fiber) -have had both for decades. There are lots of causes for Peripheral neuropathy which can begin either slowly or fast. Typically though, it affects both sides fairly symmetrically. When only one side is involved, it could be something else. I wouldn’t worry yourself too much because there are so many things that can cause your symptoms . But I would definitely talk to the regular doctor about it and better yet, a neurologist if that’s an option.

ME/CFS can definitely cause nerve damage, and especially if it started with the Epstein Barr Virus, as was with my case.

Wishing you all the best.

I don't know what I have. I have had POTS, PEM, brain fog, fatigue, increased sensitivity and anxiety, etc, but I am "functional." My symptoms have fluctuated across time and like I said, there was even a point when I thought I was getting out of this. The only thing I know is that my life was changed and that I no longer am who I used to be. I am not fine.

May I ask how were your symptoms when your polyneuropathy first started? Can you describe exactly and with great detail what you felt? I would appreciate it very much.

 

[Angel Bryan]

@Angel Bryan

Supplementation with high concentrations of the pyridoxine form only of Vitamin B6 competitively inhibits the active Pyridoxal 5' phosphate (P5P) form which actually leads to decreased vitamin B6 function rather than enhancing it. Also, Pyridoxine is shown to also be the toxic form of vitamin B6 so care to avoid higher doses.
https://pubmed.ncbi.nlm.nih.gov/28716455/
Vitamin B6 normally needs Zinc, Magnesium, and Vitamin B2 (flavin mononucleotide (FMN); also known as riboflavin-5’-phosphate) in the conversion to active B6 (P5P).

The ingredient citric acid may also add to some symptoms. This is not the natural in fruit but the added ingredient.

I was not supplementing any B vitamins when the bout of whatever this is started. The only interventions I was undergoing were those I mentioned in the original post, which I suspect NAC to be the primary offender

It could make sense as I took 2400 mg of NAC daily for 22 days but I don't really know how safe or risky this was, so you judge.

After this happened, I got an injection of B complex vitamins which contain Pyridoxine as a form of B6 and was planning to continue one injection each week until the box was finished but now I suppose I shouldn't, right?

It did nothing for the neuropathy but I was hoping to see effects after the second dose. What would you recommend?

This is the product in question:

@Zebra

Ceruloplasmin is needed to make copper usable and requires zinc as a cofactor, so it would be only with severe excess of zinc all the time every day creating a true deficiency of copper intake to lessen zinc in that one case, rather than a deficiency of ceruloplasmin creating the deficiency of having no usable copper due to the low ceruloplasmin despite plenty of copper intake and its presence being the issue.
https://forums.phoenixrising.me/thr...per-but-also-side-effects.91503/#post-2452757

I would use this link to check serum copper and serum ceruloplasmin (the usable copper) after blood tests and can calculate free copper levels unbound to ceruloplasmin using this link but this is a spot check at the time of the test only. This does not reflect any long term accumulation in the tissues that may have also been going on.
https://web.archive.org/web/2021030...ients-families/lab-tracker-copper-calculator/

What about NAC depleting copper? I just suspended the NAC and started supplementing 50 mg of zinc daily and plan to also add copper. Does this sound like a good plan or should I do something else?

I am eager to hear your inputs, thanks.

 

[cfs since 1998]

50mg zinc is a high dose. I seem to remember one of the CFS doctors, maybe it was Dr. Cheney, saying copper deficiency was common in CFS patients.

 

[pamojja]

I did started supplementing with B complex vitamins but only AFTER the neuropathy episode arise, which I don't think it had any effect at all.

I was not supplementing any B vitamins when the bout of whatever this is started.

After this happened, I got an injection of B complex vitamins which contain Pyridoxine as a form of B6 and was planning to continue one injection each week until the box was finished but now I suppose I shouldn't, right?

Neuropathy can start because of too high unmetabolized pyridoxamine, or too low blood levels. So in your case, both could be at play: first too low, then too high unmetabolized pyridoxamine from the injections. I would stop any pyridoxamine, but take the pyridoxal P-5-P form of vitamin B6 instead.

According to my OAT test I took on April, my B6 levels are low but whitin range.

At the very lowest end most likely isn't your personal optimal range.

50mg zinc is a high dose.

About that much daily zinc for a decade, didn't bring my too high blood copper levels down, or my too low zinc blood level substantially up.

 

[2Cor.12:19]

May I ask how were your symptoms when your polyneuropathy first started? Can you describe exactly and with great detail what you felt? I would appreciate it very much.

@Angel Bryan - When I first became ill with ME/CFS back in 1986 (39 years ago) , it began with an acute Epstein Barr Virus infection that attacked my nervous system. I was very ill with many symptoms affecting every part of my body which included intense vibrating sensations mostly in my legs along with stabbing pains here there and everywhere. I could barely raise my head off the pillow. The worst of it lasted about 9 months, but I remained bedridden most of each day for about 3 years.

I was very fortunate to have been diagnosed within the first 6 months with Chronic Fatigue Syndrome (they originally called it Chronic EBV syndrome). Over the next ten years I made incremental improvements to as much as 70% recovery. Although I was never well enough to return to college or work outside the home, I was able to travel and function pretty well otherwise with pacing. But my ME/CFS would fluctuate with crashes and relapses.

One thing that was always a constant was the vibrating sensations I got in my legs when I was tired, which was a result of the nerve damage caused by initial EBV infection that triggered ME/CFS. It took decades and several neurologists and rheumatologists working with me to sort all this out. I had many tests for autoimmune diseases along with extensive Nerve conduction tests.

Then about 20 years ago, I started having tingling and a little numbness in my toes and feet- symmetrically. It was off and on for a long time. Around the same time I also started having tinnitus, POTS, constipation, dry mouth and eyes, bouts of vertigo. These were all off and on also and were a result of nerve damage to my autonomic nervous system in addition to the peripheral nerves. I also have Hashimoto’s and sleep apnea.

Over the years the tingling and semi-numbness in my feet slowly moved up both legs equally to where I developed what they call “stocking glove” sensations. My legs and feet feel like they’re wrapped in tight plastic and feel very heavy. This all came on gradually as in the earlier years of this I was able to walk fine. 10 years ago I walked all over New York City and Washington DC. Today I need a motorized chair to get through Costco. (Which btw isn’t such a bad thing! ). But even now I still have sensation in my legs and feet. They aren’t completely numb.

As the nerve damage in my feet and legs progressed, my tinnitus became non stop, my POTS worsened, and my constipation, dry mouth became chronic.

The muscles in my legs became weaker and my balance is now severely affected due to the axon damage. I have to walk very slowly and pay attention and use a cane in the yard because of the uneven surface. My ME/CFS has also worsened as I’ve aged to where I’m housebound again like I was in the early years.

But considering that I’m almost 74 and have lived with severe chronic illness and nerve damage for nearly 40 years, I’m thankful that I can still take care of my personal needs and still do light housework and cooking.

Attitude is so very important in dealing with long term disability. There’s no question that our mental health is put to the biggest challenge but how we chose to deal with it emotionally will also affect the illness itself. Anxiety , depression and panic attacks often accompany this which makes everything seem overwhelming. But, there are many things we can do to combat those things.

I hope this helps a little. Getting a solid diagnosis would be the best place to start, if you can. On a side note , if could change one thing in my 40 years of searching for answers, it would be to not have wasted so much money (thousands!) on supplements, diets, and whatnot. Now I just try to eat sensibly and only take a multivitamin and D.

Wishing you all the best.

 

[Zebra]

Did you had neuropathy at any point and if so, raising your copper level fixed it?

Yes. Over the past 11 years I've had 5-7 NCS demonstrating a progressive mixed sensory and motor neuropathy. Etiology remains unknown/unclear.

It's worth noting that it took a while for my symptoms to be "validated" by the NCS. I'm lucky that I had a neuro who was willing to repeat testing during periods of exacerbation.

Nobody has checked my copper levels in many years, and this thread has inspired me to ask to get them re-checked out of curiosity.

 

[datadragon]

What about NAC depleting copper? I just suspended the NAC and started supplementing 50 mg of zinc daily and plan to also add copper. Does this sound like a good plan or should I do something else?

I am eager to hear your inputs, thanks.

Blood tests will help. Serum copper shows your copper level at the time of the blood test, but serum ceruloplasmin is actually the usable copper ready to be utilized by the body for many of coppers functions. So if say serum copper was normal or high but serum ceruloplasmin is low or deficient this can be one indicator of a copper deficiency due to the deficiency of ceruloplasmin even though you actually don’t need more copper in that case if serum copper was not also low, but to try to raise ceruloplasmin production instead to make the copper that is already in your body usable again. Unfortunately the nutrients for this can get depleted by things like inflammation. Chelated zinc such as a solgar chelated zinc, retinol vitamin A such as solgar dry vitamin A tablet and magnesium sulfate like an epsom salt bath or foot soak, or dr Clark makes pills could possibly help here to raise ceruloplasmin and retest if not feeling better. Taking too much zinc daily might lower copper (serum copper) if taken at same time as copper intake.
https://forums.phoenixrising.me/thr...per-but-also-side-effects.91503/#post-2452757

About that much daily zinc for a decade, didn't bring my too high blood copper levels down, or my too low zinc blood level substantially up.

Females tend to retain more copper due to higher estrogen levels, and over time can build up the excess in tissues if high copper with low zinc was present over a long time. Keep a watch for hidden souces like copper piping copper iud copper sulfate sprayed on crops non food copper supplements etc.
Zinc gets put into the cell and absorption is lowered during inflammation/infection states. It may take chelated zinc such as a solgar chelated zinc to bypass the absorption issue. Vitamins A retinol animal form and D in rda concentration might next help increase zinc or an anti inflammatory to lower the chance of zinc being pushed back into the cell.
https://pubmed.ncbi.nlm.nih.gov/17171460/

 

[datadragon]

I was not supplementing any B vitamins when the bout of whatever this is started. The only interventions I was undergoing were those I mentioned in the original post, which I suspect NAC to be the primary offender

It could make sense as I took 2400 mg of NAC daily for 22 days but I don't really know how safe or risky this was, so you judge.

After this happened, I got an injection of B complex vitamins which contain Pyridoxine as a form of B6 and was planning to continue one injection each week until the box was finished but now I suppose I shouldn't, right?

Puridoxine would again inhibit the active form of b6 so could actually cause a deficiency of b6 and lead to the neuropathy or at least making symptoms worse if continued so I would only try the active p5p if any b6.

50mg zinc is a high dose. I seem to remember one of the CFS doctors, maybe it was Dr. Cheney, saying copper deficiency was common in CFS patients.

Cofactors to make copper usable are depleted during infection or inflammation states such as zinc magnesium and retinol vitamin A. So as a side effect downstream problems like having plenty of copper intake but it’s deficient at the same time can arise. This is like being in the middle of the ocean surrounded by water yet still starved of usable water in a form you can drink.

 

[pamojja]

About that much daily zinc for a decade, didn't bring my too high blood copper levels down, or my too low zinc blood level substantially up.

Females tend to retain more copper due to higher estrogen levels, and over time can build up the excess in tissues if high copper with low zinc was present over a long time.

In my case, the cause for persisting high copper, was following the advice to balance high zinc intake with copper. It was caused by about 1700 mcg/d of copper for about 4 years, additional to zinc. I'm male.

 

[Angel Bryan]

@Angel Bryan - When I first became ill with ME/CFS back in 1986 (39 years ago) , it began with an acute Epstein Barr Virus infection that attacked my nervous system. I was very ill with many symptoms affecting every part of my body which included intense vibrating sensations mostly in my legs along with stabbing pains here there and everywhere. I could barely raise my head off the pillow. The worst of it lasted about 9 months, but I remained bedridden most of each day for about 3 years.

I was very fortunate to have been diagnosed within the first 6 months with Chronic Fatigue Syndrome (they originally called it Chronic EBV syndrome). Over the next ten years I made incremental improvements to as much as 70% recovery. Although I was never well enough to return to college or work outside the home, I was able to travel and function pretty well otherwise with pacing. But my ME/CFS would fluctuate with crashes and relapses.

One thing that was always a constant was the vibrating sensations I got in my legs when I was tired, which was a result of the nerve damage caused by initial EBV infection that triggered ME/CFS. It took decades and several neurologists and rheumatologists working with me to sort all this out. I had many tests for autoimmune diseases along with extensive Nerve conduction tests.

Then about 20 years ago, I started having tingling and a little numbness in my toes and feet- symmetrically. It was off and on for a long time. Around the same time I also started having tinnitus, POTS, constipation, dry mouth and eyes, bouts of vertigo. These were all off and on also and were a result of nerve damage to my autonomic nervous system in addition to the peripheral nerves. I also have Hashimoto’s and sleep apnea.

Over the years the tingling and semi-numbness in my feet slowly moved up both legs equally to where I developed what they call “stocking glove” sensations. My legs and feet feel like they’re wrapped in tight plastic and feel very heavy. This all came on gradually as in the earlier years of this I was able to walk fine. 10 years ago I walked all over New York City and Washington DC. Today I need a motorized chair to get through Costco. (Which btw isn’t such a bad thing! ). But even now I still have sensation in my legs and feet. They aren’t completely numb.

As the nerve damage in my feet and legs progressed, my tinnitus became non stop, my POTS worsened, and my constipation, dry mouth became chronic.

The muscles in my legs became weaker and my balance is now severely affected due to the axon damage. I have to walk very slowly and pay attention and use a cane in the yard because of the uneven surface. My ME/CFS has also worsened as I’ve aged to where I’m housebound again like I was in the early years.

But considering that I’m almost 74 and have lived with severe chronic illness and nerve damage for nearly 40 years, I’m thankful that I can still take care of my personal needs and still do light housework and cooking.

Attitude is so very important in dealing with long term disability. There’s no question that our mental health is put to the biggest challenge but how we chose to deal with it emotionally will also affect the illness itself. Anxiety , depression and panic attacks often accompany this which makes everything seem overwhelming. But, there are many things we can do to combat those things.

I hope this helps a little. Getting a solid diagnosis would be the best place to start, if you can. On a side note , if could change one thing in my 40 years of searching for answers, it would be to not have wasted so much money (thousands!) on supplements, diets, and whatnot. Now I just try to eat sensibly and only take a multivitamin and D.

Wishing you all the best.

I don't want to sound insensitive but that sounds horrible. I don't want that to happen to me.