viral bacterial or fungal reasons for neuropathy

wolves2626

Senior Member
Messages
112
hi all folks friends,

is it possible that small fiber neuropathy some kind of infection related? or autoimmunity is the reason?
I took ivig which did nothing, steroids only a little effect etc. gabapentin is helping.
does someone have sfn here if so do you have mobility issues weakness in body etc?

my diagnosis came later on covid or vaccines however I had issues before that prostatitis and mostly suspected reactive arthritis which never officially diagnosed.

I have got now pytriasis versicolor mostly through the antibiotics use because of prostatitis of unknown origin.

after vaccines or covid I believe I have 2 to 4 small patches of pytriasis rosea. is this related with a virus?

last of all, I did have a little high titess ebv and chlamydia pnemoniae. Do not remember which type? all of them dismissed.

I still believe my problems started with some kind of infection bacterial or viral turn into autoimmune.

also want to share an interesting find of mine a blog site about malassezia species causative agent for pytriasis versicolor egzama and so on. pretty interesting it is found as contributing agents in as , reactive arthritis ,crohns.

https://www.malassezia.org/

should I get tested again for ebv chlamydia and others? are they causative agents for neuropathy?

thanks for all the insights. may Allah bless us all. in this holy Friday night of Ramadan may Allah lead us to regain our health again . mighty Allah give us strength to manage our days and life. accept our prayers please in this holy Friday night. keep me sane cause I am losing my mind the find the reason why me and why this illnesses?
 
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Zebra

Senior Member
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Location
Northern California
may Allah bless us all. in this holy Friday night of Ramadan may Allah lead us to regain our health again . mighty Allah give us strength to manage our days and life. accept our prayers please in this holy Friday night. keep me sane cause I am losing my mind the find the reason why me and why this illnesses?

Hi, @wolves2626

What a beautiful prayer.
I stand in agreement with you asking Allah to bring you peace during this time of inner turmoil.
I have been there, and it's nearly unbearable.

I have been diagnosed with Small Fiber Neuropathy, although the exact cause remains unknown.

I had a skin punch biopsy that was normal early on in the disease process, but became positive for SFN many years later.

My medical team has not put too much effort into identifying the underlying cause. It was first shrugged off as "idiopathic" and many years later was attached to (suspected) underlying Sjogren's Syndrome.

I believe you are asking for input on infections diseases that may cause SFN.

The resource I trust for information on SFN lists the following infections in relation to SFN:

Lyme
Hepatitis C
HIV-1

Of course there is a long list of non-infectious conditions as well, and I'm going to include a link to the Pathology company that read both my first and second biopsies.

https://therapath.com/small-fiber-neuropathy-overview/

Hope this helps you a little bit. ☺️
 

wolves2626

Senior Member
Messages
112
Hi, @wolves2626

What a beautiful prayer.
I stand in agreement with you asking Allah to bring you peace during this time of inner turmoil.
I have been there, and it's nearly unbearable.

I have been diagnosed with Small Fiber Neuropathy, although the exact cause remains unknown.

I had a skin punch biopsy that was normal early on in the disease process, but became positive for SFN many years later.

My medical team has not put too much effort into identifying the underlying cause. It was first shrugged off as "idiopathic" and many years later was attached to (suspected) underlying Sjogren's Syndrome.

I believe you are asking for input on infections diseases that may cause SFN.

The resource I trust for information on SFN lists the following infections in relation to SFN:

Lyme
Hepatitis C
HIV-1

Of course there is a long list of non-infectious conditions as well, and I'm going to include a link to the Pathology company that read both my first and second biopsies.

https://therapath.com/small-fiber-neuropathy-overview/

Hope this helps you a little bit. ☺️
they told me idiopathic like yours . rheumatology and other blood tests related they showed nothing at all.
lyme and others you mentioned were negative as well.

mine was also diagnosed through a punch biopsy diminished inter? epidermal fibres in size was found

however I could not walk properly at most 5k steps daily and up to 15 minutes max at a time.

I have a demanding job which I need to teach most of the time. standing still long time is a problem .

do you use any drugs and supplements for pain and weakness? do not know but nsaids make me feel better. gabapentin for burning also.

and ps I could not open the link you sent.
thanks anyway.

I am positive it has something to do with infection. I have pain like sciatica in all legs and arms.
 

wolves2626

Senior Member
Messages
112
last question do you have pain when waking up ? also is your pain like throbbing? shooting?
my achilles legs and sciatic nerves like this in the mornings.

so you could walk without no issues?
 
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wolves2626

Senior Member
Messages
112
In addition, some supplements make me feel cold and tingly I have a cold sensations with b12 omega 3.

some make my nerves firing burning like nigella sativa, melatonin, even gabapentin at times.

only feel good with quercetin good for my pain.

sorry to bother everyone. I live in Türkiye here doctors have no clue of what's happening to me.

they only throw antidepressants and epileptics even they tried steroids and ivig with no improvement.
I had to wait ivig for a year bureaucracy and other stuff.

sorry to bother but these sites are like some kind of notebooks a dairy a memory book . so I am writing with this aim too.

thanks a lot everyone.
 
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Zebra

Senior Member
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1,040
Location
Northern California
so you could walk without no issues?

Nope. I cannot walk far at all. My sister has been pushing me in a wheelchair to all of my medical appointments the past few years.

However, I do not attribute the weakness in my lower limbs to SFN.

In my case, I also have long-fiber neuropathy (dx via NCS/EMG) of both sensory and motor nerves in lower limbs.

In an unrelated MRI of my pelvis/thighs, my sciatic nerves (bilateral) were found to be thickened, indicating an inflammatory condition according to my neurologist.

I think my SFN is likely the source of the burning sensations in my feet and hands.

I think long-fiber neuropathy causes the throbbing pain (and weaknesses) that travels down my legs.

I usually wake up in the AM with tight calves, ankles, feet and if I use my legs too much I will get terrible cramps in calves, feet, and toes.

Have you had a NCS/EMG? If not, that might provide you with additional information.

Thank you for letting me know that you live in Turkey. I've always wanted to travel there, but because of ME/CFS (or whatever this is) my traveling days are over.
 

wolves2626

Senior Member
Messages
112
thanks for the reply.

sorry for your suffering and walking problems too.

I have several emgs. the last one only for small fibers showed nothing wrong at all.

in some needle emgs I have got problems however they mostly suspected from myasthenia g. blood markers came negative.

I also had muscle biopsy done which was not conclusive for any muscle disease.

and I do lost my belief in medicine. not being followed by any doctor right now. mostly on my own and a physical therapy m.d. . trying acupuncture ozone and also she could prescribe gabapentin which is enough I think.

hope you could travel again some day . mine are over too.
 

Zebra

Senior Member
Messages
1,040
Location
Northern California
Gosh, @wolves2626.

It sounds like you and I have pushed for very similar work ups!

I've had more NCS/EMGs than I can count, and I've been tested for Myasthenia Gravis and Lambert Eaton antibodies many, many times.

About two years after the onset of my illness, I had an abnormal muscle biopsy. However, the fancy neuromuscular specialist I was sent to was incredibly dismissive and shrugged it off the abnormalities as secondary to some other condition, but not in the realm of a true neuromuscular disease. Thanks for nothing, Jerk!

and I do lost my belief in medicine. not being

Me, too!

Unfortunately I am forced to keep interacting with the medical community due to other health issues and to satisfy long-term disability insurance requirements.

Have you ever tried Mestinon for muscle weakness?

Despite being sero-negative for MG and LEMS, my neuro prescribed it to me compassionately to see how I would do.

When I first started taking it, there was a noticeable difference, and I would carefully take the medication just before I needed (or wanted) to do something physical, like take a short 10 min walk, or just before a doctor's appt.

I don't get that same "lift" anymore, perhaps I need a higher dosage, but wanted to share with you in case you haven't tried it.

It might speed up your digestive tract a bit in the beginning, so maybe try it out at home first. 😁

I hope you are able to find ways to improve your symptoms a little bit.
 

wolves2626

Senior Member
Messages
112
I have not tried however I could not more possibly.

I do not think they may prescribe it for me. no one actually.
my neurologist is nothing by a jerk.
only bring opioids antidepressants and others.
 

Wayne

Senior Member
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4,561
Location
Ashland, Oregon
should I get tested again for ebv chlamydia and others? are they causative agents for neuropathy?
Hi @wolves2626 -- I tend to think about health issues like these a bit differently than most people, From my perspective, if I suspect I may have some kind of infection, I just assume that I have it. When I do that, I start taking measures that I believe would give me the best chance of counteracting it.

Whether or not I have it doesn't really matter, because I know I would never take any kind of antibiotic or antiviral, which I don't believe builds up the body. What I would start doing would be more foundationally based, that will in some way, shape, or form improve my bodily health regardless of whether or not I have a particular infection. So I'm not big on testing.

As far as causative agents for neuropathy? I'm guessing there are many things that can cause neuropathy, from external environmental toxins, to internal dysfunction going on inside our bodies for any number of reasons. Again, I would assume I'm dealing with both external toxins/factors and internal factors, and take it from there.

One of the most important things I think anybody can do for neuropathy is to do HBOT. Here's a LINK in case you might want to check out a good video on HBOT being good for neuropathy. -- Take care, all the best...
 

cfs since 1998

Senior Member
Messages
796
Antivirals have paradoxically given me neuropathy but antibiotics haven't. I've never taken an antifungal.

Antivirals only block viruses from replicating, they don't kill them. Yet, two CFS Valcyte studies (including one placebo-controlled) showed a huge drop in monocytes after starting treatment. The reason is not known.
 

wolves2626

Senior Member
Messages
112
Antivirals have paradoxically given me neuropathy but antibiotics haven't. I've never taken an antifungal.

Antivirals only block viruses from replicating, they don't kill them. Yet, two CFS Valcyte studies (including one placebo-controlled) showed a huge drop in monocytes after starting treatment. The reason is not known.
the opposite for me bactrim and cipro made me worse which I use them for my chronic prostatitis issues often.

on the other hand, I felt great with valcyte once. they only longer prescribe it to me.
who knows everyone is different.
 
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