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Update: IVIG Approval and Small Fiber Neuropathy (SFN)

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Posted 5/5/2017 2:11 PM (GMT 0)
I have been seeing a Lyme Literate Neurologist in Boston for a while now. He confirmed a previous diagnosis of Autonomic Nervous System Disorder, his specialty. He realized several years ago that many of his patients mentioned Lyme disease, so many that he had the rest tested. Almost 80% were positive or showed exposure. This led him to become literate in Lyme disease. He works closely with my Lyme doc at Spaulding Hospital.

As part of his testing, he performed a small fiber nerve biopsy which indicated Small Fiber Neuropathy. I have been dealing with Neuropathy for almost five years now; the first recognizable Lyme symptom for me. My skin biopsy showed my epidermal nerve fiber is reduced to 33% of normal. And my sweat gland nerve fiber density is reduced to 85% of normal.

My Lyme Dr. had already prescribed IV Imunoglobulin which is the prescribed course to treat this. If anyone is in the greater Boston area and would like the names of either of these Dr.'s send me an email. I will post back after I begin the treatments.

Good Luck to all,
Ed

Post Edited (ShutterGy) : 5/30/2017 7:32:20 AM (GMT-6)

Posted 5/5/2017 2:13 PM (GMT 0)
I forgot to mention that he believes this condition is caused by both Lyme ans Babesiosis in those who have been infected for a long time.
Ed
Posted 5/5/2017 2:22 PM (GMT 0)
Actually, I would like those names, if you don't mind! I've had some people asking about good doctors in that area, I believe. So if you wouldn't mind including me in your list of names to email that information, I'd sure appreciate it! TIA!!!
Posted 5/5/2017 3:09 PM (GMT 0)
I have SFN, it's horrible! I went to a neuromuscular neurologist at a major institution on the west coast, their mascot is a bear and it's not Cal. The neurologist was a total waste of my time. Now I have to deal with her huge bill! She just shrugged her shoulders and said you have it and prescribed me more gabapentin. She didn't even mention IVIG. I didn't bring it up because I know how expensive it is, plus I knew I was starting treatment for Lyme and Bart and my LLMD said it should go away once the underlying condition is addressed. I'm still waiting for results.
You are lucky to be working with a Lyme Literate Neuro.
Posted 5/6/2017 2:33 AM (GMT 0)

ShutterGy said...
I have been seeing a Lyme Literate Neurologist in Boston for a while now. He confirmed a previous diagnosis of Autonomic Nervous System Disorder, his specialty. He realized several years ago that many of his patients mentioned Lyme disease, so many that he had the rest tested. Almost 80% were positive or showed exposure. This led him to become literate in Lyme disease. He works closely with my Lyme doc at Spaulding Hospital.

As part of his testing, he performed a small fiber nerve biopsy which indicated Small Fiber Neuropathy. I have been dealing with Neuropathy for almost five years now; the first recognizable Lyme symptom for me. My skin biopsy showed my epidermal nerve fiber is reduced to 33% of normal. And my sweat gland nerve fiber density is reduced to 85% of normal.

My Lyme Dr. had already prescribed IV Imunoglobulin which is the prescribed course to treat this. If anyone is in the greater Boston area and would like the names of either of these Dr.'s send me an email. I will post back after I begin the treatments.

Good Luck to all,
Ed

OMG Ed that is wonderful. I would love to get the name of your doctor. How did he even get IVIG approved? SFN generally won't be enough for insurance. I'm so happy you are getting IVIG. I'm full body SFN and then some....
Posted 5/6/2017 3:57 AM (GMT 0)
SFN here too. It's one of those symptoms that makes me confident in my diagnosis. You just don't hear about this with anything else. It's horrific. Fortunately mine receded into my legs whereas it used to be full body when it first came on
Posted 5/6/2017 4:03 AM (GMT 0)
How do you distinguish Neuropathy from SFN?

I have nerve pain - but I don't have the type where clothes bother my skin or touching it.
Posted 5/6/2017 8:28 AM (GMT 0)
SFN patient here too. Not that I've been diagnosed but I know I have it. Had lyme for years, get babesia, Myco, and Bart after. Can't put on a shirt or go outside if its windy. It is horrific.
Posted 5/6/2017 10:01 AM (GMT 0)
Although I don't understand the exact reason the pathways are deficient in people with SFN, it involves the inability to utilize phosphatidylcholine and my guess is that it involves phosphatidylserine. There are actually two proposed pathways for sphingomyelin formation and my gut tells me the slightly lower pH from the inflammation process and a deficiency of manganese decreases lecithin formation and it effects the many inositol isomers. G6PH deficiency can play a role as well and may indicate a blood borne pathogen like babesia. It's just one way the body tries to decrease pathogen replication. There are most likely GI absorption issues at play here as well.

Most don't want to read the articles I read so maybe these will help.

htpt://www.lindbergnutrition.com/promog/FeaturedArticle.asp?id=61&Storeid=1C7A08050B8F4419BFFBA945004CA5D1

truthnhealth.com/2012/07/what-heals-and-what-hurts-the-difference-between-lecithin-and-soy-lecithin/

The oxidative stress from the inflammatory process takes its toll on cell membranes and myelin sheaths on our nerves. We lose so much efficiency in normal processes because we struggle to find nutrients to make the pathways function. Many of us with this condition have excessive acetylcholine that is formed directly from phosphatidylcholine which may lead to phoshatidylcholine deficiency. Measures to reduce acetylcholine provoking metals may benefit some. Usually various fungi and viruses hold on to metals so reducing their influence would benefit.

I would eat foods high in linolenic acid that were not soy related. I would eat foods high in manganese. I would eat foods high in inositol like oranges or cantaloupe. It sounds like a Wahl's diet.
Posted 5/6/2017 1:29 PM (GMT 0)
Interesting. I haven't approached it from that angle but I believe in the case of borrelia this symptom is mostly autoimmune as a cross reactivity between OspA and human gangliosides. Ie a sensory variant of GBS/CIDP. I myself had high titers of anti-GM1 ab.
Posted 5/6/2017 2:37 PM (GMT 0)

Psilociraptor said...
Interesting. I haven't approached it from that angle but I believe in the case of borrelia this symptom is mostly autoimmune as a cross reactivity between OspA and human gangliosides. Ie a sensory variant of GBS/CIDP. I myself had high titers of anti-GM1 ab.

This is very common. SFN is immune mediated in the context of Lyme. The immune system gets confused and attacked the dorsal root ganglia and you develop those antibodies. Have you considered getting a punch biopsy? If it is positive and you have those antibodies, it's probably enough to get IVIG.
Posted 5/6/2017 2:40 PM (GMT 0)

Girlie said...
How do you distinguish Neuropathy from SFN?

I have nerve pain - but I don't have the type where clothes bother my skin or touching it.

SFN you will have burning like acid is being poured on you and skin hypersensitivity. SF nerves are your pain and temperature sensing nerves. They are made up of little to no myelin, which is why it takes so long for them to repair.
Posted 5/6/2017 2:45 PM (GMT 0)

oddity said...
I have SFN, it's horrible! I went to a neuromuscular neurologist at a major institution on the west coast, their mascot is a bear and it's not Cal. The neurologist was a total waste of my time. Now I have to deal with her huge bill! She just shrugged her shoulders and said you have it and prescribed me more gabapentin. She didn't even mention IVIG. I didn't bring it up because I know how expensive it is, plus I knew I was starting treatment for Lyme and Bart and my LLMD said it should go away once the underlying condition is addressed. I'm still waiting for results.
You are lucky to be working with a Lyme Literate Neuro.


SFN is not enough to get IVIG covered by insurance, which is why the neuro didn't mention it. Some people who develop subacute non-length dependent small fiber neuropathy can sometimes get a trial of IVIG, but most of the time people do not get it. You would need to be positive with Sjogrens or be positive for certain nerve antibodies and have SFN to get IVIG covered...but there are always exceptions.
Posted 5/6/2017 2:59 PM (GMT 0)
When I couldn't even have the bed sheets touch my skin (forget wearing clothes), the only thing I did at that time was a ton of detoxing, and it started easing up. One of the biggest helps to me at this time, was actually getting into dry skin brushing, believe it or not. I had to start off with a wet washcloth and wet skin in order to tolerate it -and there was no way I was going to set my whole body on fire like that, so I would only do one leg one day, then the other leg the next day, then an arm, and so on.

That's the "hard way" to do this, but it did work for me. Dry skin brushing got my skin into detoxing, rather than just having it as something for the bacteria to attack.
Posted 5/6/2017 3:01 PM (GMT 0)
So you sound like the person to ask because I haven't gone deep into this one and don't know the anatomy of nerves very well but GBS variants are generally demyelinating disorders but small fiber nerves don't have myelin? But they also express the same gangliosides? That seems odd to me. I know I have GM1 ab which is common in GBS too

I should say mine repair really quickly though. I've had a full blown relapse of body wide neuropathy and back to baseline in two weeks. I attribute some of that success to dietary changes as my first lapse took me 7 months when I was eating SAD. Switched to paleo and rapidly improved, then relapsed (from a swimming pool, the same one that caused my onset). But recovered in two weeks that time. At this point I still have residual neuropathy in my legs but I still have active disease and it responds strongly to antibacterials. I haven't gotten a biopsy. I don't really care to get IVIG as I won't be able to afford it long term and my neuropathy is nowhere the problem it was when this all started.

Oh traveler I had that same issue at first. I would wake up in the night in jolts of pain because a bed sheet touched me. It's so validating to hear these experiences after being uncertain of my diagnosis. This just isn't a symptom you hear about from any other disease. Not in this context at least. I know there are other causes but they're mostly obvious (HIV, diabetes, Celiac)

Post Edited (Psilociraptor) : 5/6/2017 9:04:19 AM (GMT-6)

Posted 5/6/2017 3:13 PM (GMT 0)
And talk about painful and shocking!! LOL! I couldn't believe it when I could no longer even shower!! And boy was I glad that hubby wasn't around and I was living by myself!! Only the dogs know how long I would go between showers! LOL! I did wash up - very carefully - though. smile
Posted 5/6/2017 4:01 PM (GMT 0)
Haha yeah I think my SO has had to deal with my stinky feet on account of the fact that I couldn't wear socks for months and when I finally could I could only wear one pair of expensive hiking socks. So my shoes are permanently ruined and I'm constantly reusing socks but I think I'm finally at the point I can get some new shoes and cheap socks and be okay so long as they're not tight
Posted 5/6/2017 4:07 PM (GMT 0)
"SFN you will have burning like acid is being poured on you and skin hypersensitivity. SF nerves are your pain and temperature sensing nerves. They are made up of little to no myelin, which is why it takes so long for them to repair."


So there isn't varying 'degrees' of SFN?


I don't have skin hypersensitivity...so that means I just have 'regular' (for lack of a better word) nerve pain?
Posted 5/6/2017 4:33 PM (GMT 0)

Psilociraptor said...
So you sound like the person to ask because I haven't gone deep into this one and don't know the anatomy of nerves very well but GBS variants are generally demyelinating disorders but small fiber nerves don't have myelin? But they also express the same gangliosides? That seems odd to me. I know I have GM1 ab which is common in GBS too

The criterion to meet a pure sensory variant of GBS is rare. Even those of use who are full body, non-length dependent probably would not meet that criterion.

Small fiber nerves have little to no myelin. These are your delta A and C fibers. There are some very good pictures on google image.

It's not that the small fiber nerves express the same gangliosides. It is something that is seen with people who have full body small fiber neuropathy with a quick onset (from Lyme or other causes) also end up positive for gangliosides....that's what grants them IVIG, which improves the SFN.

One of my first symptoms was an abnormal EMG of my peroneal nerve (large fiber damage)....so the autoimmune process was already starting in my body and I had no clue why or didn't know what was coming my way.

Psilociraptor said...

I should say mine repair really quickly though. I've had a full blown relapse of body wide neuropathy and back to baseline in two weeks. I attribute some of that success to dietary changes as my first lapse took me 7 months when I was eating SAD. Switched to paleo and rapidly improved, then relapsed (from a swimming pool, the same one that caused my onset). But recovered in two weeks that time. At this point I still have residual neuropathy in my legs but I still have active disease and it responds strongly to antibacterials. I haven't gotten a biopsy. I don't really care to get IVIG as I won't be able to afford it long term and my neuropathy is nowhere the problem it was when this all started.

If your nerve problem repaired that quickly, either you caught it early and/or you didn't have a very bad case (even though I'm sure you felt awful and it was extremely painful) and your dorsal roots were probably not damaged.

Post Edited (madisongrrl) : 5/6/2017 10:47:09 AM (GMT-6)

Posted 5/6/2017 4:46 PM (GMT 0)

Girlie said...
"SFN you will have burning like acid is being poured on you and skin hypersensitivity. SF nerves are your pain and temperature sensing nerves. They are made up of little to no myelin, which is why it takes so long for them to repair."


So there isn't varying 'degrees' of SFN?


I don't have skin hypersensitivity...so that means I just have 'regular' (for lack of a better word) nerve pain?

If you are not on some type of continuous pharmaceutical for pain management for the nerve burning and are not consumed with how much pain you are in every minute of every day, you would probably not have an abnormal punch biopsy and would not meet the criteria of small fiber neuropathy per most neuromuscular neurologists.

In my opinion, there are degrees of SFN and the punch biopsy misses it in cases where neuropathy is patchy. There are cases where you can have a normal punch biopsy and QSART is abnormal ....the more enlightened neuros will diagnose SFN just based on that. We also have good neuros at Hopkins and Washington, who will tell you that you can have a negative biopsy and still have it.
Posted 5/6/2017 5:25 PM (GMT 0)

Georgia Hunter said...
Although I don't understand the exact reason the pathways are deficient in people with SFN, it involves the inability to utilize phosphatidylcholine and my guess is that it involves phosphatidylserine. There are actually two proposed pathways for sphingomyelin formation and my gut tells me the slightly lower pH from the inflammation process and a deficiency of manganese decreases lecithin formation and it effects the many inositol isomers. G6PH deficiency can play a role as well and may indicate a blood borne pathogen like babesia. It's just one way the body tries to decrease pathogen replication. There are most likely GI absorption issues at play here as well.

Most don't want to read the articles I read so maybe these will help.

htpt://www.lindbergnutrition.com/promog/FeaturedArticle.asp?id=61&Storeid=1C7A08050B8F4419BFFBA945004CA5D1

truthnhealth.com/2012/07/what-heals-and-what-hurts-the-difference-between-lecithin-and-soy-lecithin/

The oxidative stress from the inflammatory process takes its toll on cell membranes and myelin sheaths on our nerves. We lose so much efficiency in normal processes because we struggle to find nutrients to make the pathways function. Many of us with this condition have excessive acetylcholine that is formed directly from phosphatidylcholine which may lead to phoshatidylcholine deficiency. Measures to reduce acetylcholine provoking metals may benefit some. Usually various fungi and viruses hold on to metals so reducing their influence would benefit.

I would eat foods high in linolenic acid that were not soy related. I would eat foods high in manganese. I would eat foods high in inositol like oranges or cantaloupe. It sounds like a Wahl's diet.


I'm going to try Lion's Mane for this. I know it's going to take awhile, and that I need to continue to get the bacteria under control, other wise it's just going to get nowhere.
Posted 5/6/2017 8:30 PM (GMT 0)

madisongrrl said...

Psilociraptor said...
So you sound like the person to ask because I haven't gone deep into this one and don't know the anatomy of nerves very well but GBS variants are generally demyelinating disorders but small fiber nerves don't have myelin? But they also express the same gangliosides? That seems odd to me. I know I have GM1 ab which is common in GBS too

The criterion to meet a pure sensory variant of GBS is rare. Even those of use who are full body, non-length dependent probably would not meet that criterion.

Small fiber nerves have little to no myelin. These are your delta A and C fibers. There are some very good pictures on google image.

It's not that the small fiber nerves express the same gangliosides. It is something that is seen with people who have full body small fiber neuropathy with a quick onset (from Lyme or other causes) also end up positive for gangliosides....that's what grants them IVIG, which improves the SFN.

One of my first symptoms was an abnormal EMG of my peroneal nerve (large fiber damage)....so the autoimmune process was already starting in my body and I had no clue why or didn't know what was coming my way.

Psilociraptor said...

I should say mine repair really quickly though. I've had a full blown relapse of body wide neuropathy and back to baseline in two weeks. I attribute some of that success to dietary changes as my first lapse took me 7 months when I was eating SAD. Switched to paleo and rapidly improved, then relapsed (from a swimming pool, the same one that caused my onset). But recovered in two weeks that time. At this point I still have residual neuropathy in my legs but I still have active disease and it responds strongly to antibacterials. I haven't gotten a biopsy. I don't really care to get IVIG as I won't be able to afford it long term and my neuropathy is nowhere the problem it was when this all started.

If your nerve problem repaired that quickly, either you caught it early and/or you didn't have a very bad case (even though I'm sure you felt awful and it was extremely painful) and your dorsal roots were probably not damaged.

Sorry I got a bit of poo brain and I'm not following you here. You're saying that it is autoimmune. But you're saying anti-ganglioside AB aren't necessarily causing it? Just coincidental? So whats the primary mechanism and target antigen?

As far as my case I didn't really catch it as I didn't do anything for it aside from change diet months after the fact. Even now if I take antibacterials it improves substantially even though it's been two and a half years. I thought dorsal root damage was implied in SFN but I'm not terribly familiar with this area. My personal opinion on this one was always that the damage was rather reversible if the inflammation was halted

I also find it interesting the distinguishment between full body and length dependent. My understanding was that it was always full body and the distortion per length only reflected the extent of damage. When mine first came on it was all over my body. As I improved it retreated to my legs. If I take a strong antibacterial I will herx that symptom anywhere on my body however. In other words my acute symptoms are all over and my chronic are distal

Thanks for your response. You seem like you know a lot about this topic and it's been helpful. I sort of saw the connect to GBS and felt it was good enough to move forward but now that the topic is brought up I am interested in understanding it better
Posted 5/6/2017 9:11 PM (GMT 0)

Georgia Hunter said...
Although I don't understand the exact reason the pathways are deficient in people with SFN, it involves the inability to utilize phosphatidylcholine and my guess is that it involves phosphatidylserine. There are actually two proposed pathways for sphingomyelin formation and my gut tells me the slightly lower pH from the inflammation process and a deficiency of manganese decreases lecithin formation and it effects the many inositol isomers. G6PH deficiency can play a role as well and may indicate a blood borne pathogen like babesia. It's just one way the body tries to decrease pathogen replication. There are most likely GI absorption issues at play here as well.

Most don't want to read the articles I read so maybe these will help.

htpt://www.lindbergnutrition.com/promog/FeaturedArticle.asp?id=61&Storeid=1C7A08050B8F4419BFFBA945004CA5D1

truthnhealth.com/2012/07/what-heals-and-what-hurts-the-difference-between-lecithin-and-soy-lecithin/

The oxidative stress from the inflammatory process takes its toll on cell membranes and myelin sheaths on our nerves. We lose so much efficiency in normal processes because we struggle to find nutrients to make the pathways function. Many of us with this condition have excessive acetylcholine that is formed directly from phosphatidylcholine which may lead to phoshatidylcholine deficiency. Measures to reduce acetylcholine provoking metals may benefit some. Usually various fungi and viruses hold on to metals so reducing their influence would benefit.

I would eat foods high in linolenic acid that were not soy related. I would eat foods high in manganese. I would eat foods high in inositol like oranges or cantaloupe. It sounds like a Wahl's diet.

Manganese and myo-inositol can feed the Lyme bacteria, still it is important to supplement or eat foods with these nutrients so as to meet our daily value needs. Interesting, Acetyl-Choline? So, people with Lyme Disease might have excessive amounts in the brain?

I thought Lyme usually decreased Choline? It is great for memory formation and cognition but I guess one could have excessive amounts. Most herbs that fight Lyme are ACHe inhibitors meaning they block the enzyme that breaks down Acetyl choline or degrade it. So, more Acetyl-Choline.

Me personally, Eggs which have the highest amounts of Choline in them make me depressed and numb, so maybe I have excessive amounts.
Posted 5/6/2017 9:16 PM (GMT 0)

madisongrrl said...

Girlie said...
"SFN you will have burning like acid is being poured on you and skin hypersensitivity. SF nerves are your pain and temperature sensing nerves. They are made up of little to no myelin, which is why it takes so long for them to repair."


So there isn't varying 'degrees' of SFN?


I don't have skin hypersensitivity...so that means I just have 'regular' (for lack of a better word) nerve pain?

If you are not on some type of continuous pharmaceutical for pain management for the nerve burning and are not consumed with how much pain you are in every minute of every day, you would probably not have an abnormal punch biopsy and would not meet the criteria of small fiber neuropathy per most neuromuscular neurologists.

In my opinion, there are degrees of SFN and the punch biopsy misses it in cases where neuropathy is patchy. There are cases where you can have a normal punch biopsy and QSART is abnormal ....the more enlightened neuros will diagnose SFN just based on that. We also have good neuros at Hopkins and Washington, who will tell you that you can have a negative biopsy and still have it.

****, excuse my french but I have SFN and it fluctuates. Sometimes I'm unable to put on a shirt or go outside because of the wind. If there are false negatives that scares me. As it would cost me 3000 dollars to get a diagnosis.
Posted 5/6/2017 9:21 PM (GMT 0)

madisongrrl said...

Girlie said...
How do you distinguish Neuropathy from SFN?

I have nerve pain - but I don't have the type where clothes bother my skin or touching it.

SFN you will have burning like acid is being poured on you and skin hypersensitivity. SF nerves are your pain and temperature sensing nerves. They are made up of little to no myelin, which is why it takes so long for them to repair.

Can it fluctuate like Diabetic Neuropathy? As my SFN comes and goes throughout the day but it feels exactly like acid under the skin and cold temps make it hurt so bad I can barely sit down.
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