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Update: IVIG Approval and Small Fiber Neuropathy (SFN)

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Posted 5/6/2017 9:26 PM (GMT 0)

julymorning said...

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.

July make sure it's the whole fruiting bodies and an alcohol hot water dual extract. Most mushroom suppliers are liars. Although, hot water will suffuce if it's the whole fruiting bodies.

BRANDS: Nootropics Depot is coming out with a 20:1 Dual extract which will be here soon

Real Mushrooms . com is another awesome brand

Nammex is awesome as well

Orvieda is good

I would stick with these.
Posted 5/6/2017 10:16 PM (GMT 0)

madisongrrl said...

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.

Do you have any links for this? I'd like to read about it.
Posted 5/7/2017 12:56 AM (GMT 0)
Last week the tops of both hands from the base of the thumbs to the ring fingertips have turned red and been extremely sensitive to even very mild heat and cold (scalding and freezing burn.) I ascribed it to restarting doxy and have switched to Azith. Some of the sensitivity seems to have reduced, though the redness is still there. Abx sensitivity or neuropathy from the critters?
Posted 5/7/2017 4:44 AM (GMT 0)

birthdaysuit said...

julymorning said...

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.

July make sure it's the whole fruiting bodies and an alcohol hot water dual extract. Most mushroom suppliers are liars. Although, hot water will suffuce if it's the whole fruiting bodies.

BRANDS: Nootropics Depot is coming out with a 20:1 Dual extract which will be here soon

Real Mushrooms . com is another awesome brand

Nammex is awesome as well

Orvieda is good

I would stick with these.

It's Sagewoman herbs. I haven't found them misrepresenting anything I've bought from them yet. I'm sticking with them until something causes me to change. I need simplicity in my extremely stressful life. It already came in the mail today, and I'm going to have to try it.
Posted 5/7/2017 10:36 AM (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.

I would think OspA involvement would cause more of an arthritis effect in the joints from extracellular matrix attachment.
Posted 5/7/2017 11:11 AM (GMT 0)
This is an interesting topic and one I don't think about very often. My thoughts are just that, my thoughts and nothing more. A autoimmune component to Borrelia just doesn't seem logical to me. The bacteria is able to modulate its outer surface proteins 6 different ways that we know of and it chooses to keep OspA when our immune response may be able to find it and kill it? Why not use another one and hide? Another explanation IMO would be that the binding of Borrelia causes spacial irregularities and exposes another foreign protein.

I remember when Star Wars talked about the Midi-chlorians and how horrible that film was. But after much research and thought, I believe that the life forms inside our body cause our body to act the way it does. The "Force" may actually be something that is real but just not the way the movie depicts it. It's a minute energy field (electromagnetic gradient) produced by our symbiotic partners in life. The Chinese call it the Yin and Yang. When we get a Borrelia infection, its presence changes the energy fields. This is in addition to or because of our immune response. The binding of Borrelia may cause a spacial awareness to something else that could not previously be seen. This could be why some people have major issues while others have no issues. It would be a lot more complicated than that, but just running some stuff through my head. I am convinced through my research that Lyme disease is a multi-pathogenic infection and everyone with Lyme Disease has multiple pathogens. And most of them are our native flora run amok.
Posted 5/7/2017 1:17 PM (GMT 0)
OspA a actually cross reactive to surface antigens on both nerves and joint tissues. There's a good reason for this. Molecular mimicry is a form of biomimicry that allows a pathogen to evade host immune response presumably by inducing tolerance in self-reactive immune cells. Researchers have attempted to attack the concept of molecular mimicry as a mathematical improbability but it has been demonstrated over again leading to the inevitable conclusion that it's evolutionarily driven. This is a million year old battle though. The immune system will mount an attack when tolerance is broken and that's when the onset of autoimmune disease occurs. I'm not aware of any specific literature on thresholds but I imagine part of this is concentration dependent. However after what Madison girl said I'm now unsure whether OspA has anything to do with SFN. But the vaccine alone has been implicated in reports of various peripheral nerve and arthritic disorders https://www.ncbi.nlm.nih.gov/m/pubmed/15363064/

In my belief this is one of those crucial aspects that determines successful integration of parasite within host ecology versus disease. And it's probably fairly widespread. Many gram-negative organisms will intentionally cleave sialic acids from host tissues and express them on the o-antigen portion of their lipopolysaccharides

Edit: I suppose mimicry could also facilitate other, non immune dependent, surface interactions in some cases. Such as adhesion. Not as likely as some epitopes are chemically dissimilar despite being immunologically cross-reactive. But in other cases this might be another reason a surface antigen is not downregulated in response to attack. They really do provide a myriad of functions we are only scratching the surface of

Moving beyond mimicry autoimmunity can induced through tissue damage in a process called epitope spreading. So autoimmunity really is an inherent part of many of these chronic infections

Post Edited (Psilociraptor) : 5/7/2017 7:43:47 AM (GMT-6)

Posted 5/7/2017 5:35 PM (GMT 0)

Psilociraptor said...

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?

Sorry, I probably should have been more clear. There are many Lyme patients who have both SFN and the anti-ganglioside AB at the same time (I've met lots of people on FB)....which is lucky (and unlucky) because the ganglioside panel gets IVIG and the SFN doesn't get IVIG because insurance companies suck. But both conditions improve with IVIG because you are in an antibody situation. They are both an immune-mediated process. Not everyone necessarily has both.

Antibodies for SFN have not really been identified yet (but presumed) and research neurologists are working on trying to figure this out.....therefore we do not have antibody tests for it as of today.

Psilociraptor said...

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'm so happy you halted the damage. Your story is not typical. If you join any of the FB SFN groups you will see the amount of suffering and that most people do not get better. Did you ever lose the hair on your legs? This is very common. I don't have to shave my legs anymore because they stopped growing hair.

Dorsal root damage is not necessarily implied in SFN. Most people with SFN do not have dorsal root damage. The most common presentation of this type of neuropathy is that it starts in the hands or feet. Then either stays there and moves up the limb. This implies that there could be a vascular problem caused by something like T2DM.

Psilociraptor said...

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

The non-length dependent just means that you have face and trunk burning instead of just limb burning. Or that your punch biopsy at your thigh has fewer sweat glands and density than the biopsy on your foot. Either way, the neuromuscular neurologist will assume an immune-mediated process is at work and the dorsal roots are being attacked. If you go to pub med you can read up on this. Use keywords like "non-length dependent small fiber neuropathy", "immune-mediated small fiber neuropathy", "ganglionopathy", "dorsal root ganglia" etc.

There is an experimental MRI that runs a DRG protocol (at Hopkins) that can actually look at your dorsal roots and can see the damage. I only know a handful of people who have had this done but it's the only diagnostic test that can confirm this damage.

Psilociraptor said...

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

I wish I knew nothing about this topic. My condition came on so hard with full body burning and POTS symptoms that I ended up with a neurological consult in the ER. After that, I was seen by the teaching hospital, was told that I need to get a pain management doc, and the rest is history.

Post Edited (madisongrrl) : 5/7/2017 12:03:04 PM (GMT-6)

Posted 5/7/2017 5:51 PM (GMT 0)

birthdaysuit said...

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.

You could have SFN, get a punch biopsy and have it be negative (especially because neuropathy can be very patchy with us Lyme patients)....and the neurologist might say you don't have it....but you could still have it. It's not worth getting a diagnosis unless you feel that your doctor does not believe you and isn't controlling your pain. Or if you are going to file for disability, you will need to get that punch biopsy. Or if you are trying to get a treatment like IVIG...however, you will need more than SFN to get IVIG. You would need a second diagnosis that is approved by insurance (Sjogren's or have certain nerve antibodies like mentioned previously on this thread).

Some neuros only offer a punch biopsy while others will do full autonomic testing (QSART, tilt table, etc) in addition. Some people end up with a negative punch biopsy and an abnormal QSART. Some neurons would diagnose SFN based on the abnormal QSART and others would say you don't have it. So if you are going to spend the money on this, make sure you go to a place like Hopkins or one of the other major institutions where they are leaders in this field.

I would recommend staying away from Mayo. One guy had all kinds of SFN issues and EM issues (he has Lyme and other tick-borne illnesses) went to Mayo and they said he didn't have SFN even though he had an abnormal QSART and other things going on. He went to Washinton (in Missouri) and they looked at the Mayo results and did a little further testing....and diagnosed him with SFN.
Posted 5/7/2017 6:00 PM (GMT 0)

Georgia Hunter said...

madisongrrl said...

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.

Do you have any links for this? I'd like to read about it.

Prominent LLMD's (like Dr. H, Dr. B, Dr J. of lymemd blog) say SFN is immune mediated in the context of Lyme and treat SFN with IVIG if they can get it approved (it's very expensive at 20K+ per treatment). This is why many of us end up with a non-length dependent or patchy presentation (trunk and face burning).

Here is one link about DRG:

www.ncbi.nlm.nih.gov/pubmed/23866773

If you search around on NCBI, some terms you will want to use are "non-length dependent small fiber neuropathy", "immune-mediated small fiber neuropathy", "ganglionopathy", "dorsal root ganglia" etc

Here is a link about OspA:
www.ncbi.nlm.nih.gov/pubmed/15363064
Posted 5/7/2017 6:06 PM (GMT 0)
Thank you again so much for your kind and thoughtful response. I love that there are people on here to further my education. I just started reading some papers last night but I'm out of town so I'm limited in how long i can stare at a phone without appearing anti social lol. One thing I saw was that non DRG was possibl axon mediated instead? Like I said I did have burning on my face and tongue and trunk and abdomen. It did start in my legs and move into the face though. Since I haven't gone deep into the literature I can't critique much but it does make me wonder if these two are merely a spectra of the same illness. In my own case it really just has been a reflection of the degree of damage and whether the attack is acute or smoldering in which case it's only "noticeable" in my length dependent nerves despite having damage across the board. Conduction delays are cumulative over the length of the nerve so it gives the appearance that shorter nerves aren't affected unless the degree of damage exceeds the symptom threshold which occurs in acute scenarios for me or possibly more extreme chronic scenarios for others. It was only after major improvement that it became distal. Maybe there is a fundamental difference though, just my thoughts as of now and I'll keep reading

What you said makes sense. I'm sure for the reasons above that borrelia makes numerous cross-reactive antibodies so gangliosides may just be coincidental rather than causal in this particular disorder. I didn't lose hair on my legs. How long did that take? Also on the forums did any of them address the underlying cause? I've noticed for me that this one particular symptom is the best indicator of my overall health as it is stubborn to everything but the most aggressive treatment. I wouldn't consider it long term until I knew the infection was actually gone though. At this point if I take antibacterials I will herx SFN anywhere on my body 10x the current pain level followed by further remission. I have to imagine my residual pain is still immune mediated as opposed to just stubborn nerve healing but we won't know until this infection is cleared. I can't speak for the others but I'm hopeful if they address the cause adequately this can be a thing of the past. Or at least substantially reduced as my experience suggests
Posted 5/7/2017 6:33 PM (GMT 0)
aonm.org.uk/sites/default/files/styles/LBC_Lifting%20the%20Veil_Common%20Sense%20JSC.pdf

Here is a slide deck from Dr. J (Washington DC). He sees a lot of tick-born dysesthesias (SFN) with C-fiber lesions, ganglionitis etc. It's an interesting slide deck. I tried to find the actual talk, but it doesn't appear to be anywhere.

Either way, I have to log on to work. So enjoy your Sunday everyone!
Posted 5/7/2017 6:45 PM (GMT 0)
It's been between 4-5 years ago that I first noticed when I was standing in the shower I could not 'rock' forward on my left foot, as if my toes weren't there to balance me. That eventually progressed to having the sensation of something soft stuffed around a couple of toes on that foot. I was constantly taking my shoe off and checking my socks, which were fine. After a while I would feel it while barefoot.

about 3 years ago I would have burning pain in that left foot after walking for more than 30 minutes. I couldn't wait to get my shoe off.
The past two years I've only been able to wear either sandals (no thong type!), or athletic shoes with very wide toe area, or any kind of footwear that gives me a barefoot feel.

My feet and lower legs get ice cold in the Winter...my Internist felt it and had me do a rash of A1C tests(all fine).
I would put a pair of socks on to try to warm them while I sleep but would be awakened in the night with such burning pain under the toes of my left foot I'd have to put an ice pack on them to relieve it. So no sock for the left foot.

The hair stopped growing on my legs 3 years ago. Dry skin brushing on my legs a couple of times a day seemed to encourage some 'peach fuzz', but that might have been a coincidence, however I've stopped the brushing and have no trace of hair again.

Two of the toes on my left foot (2nd and 3rd from left) have changed shape.

I have almost always described the pain that I have had in my body as "burning", more often than "aching" or "sharp", although I would experience those sometimes in addition. Thankfully after wasting years being given anti-inflammatory meds and steroids I experienced some relief with oxycodone which I take very judicially.

If this is SFN rather than demyelination? Is it possible to have both?
Strange how this foot issue has been only in one foot, although the lack of hair growth and iciness affects both feet and legs.

I would sure love to be able to heal this issue.
Posted 5/8/2017 12:03 AM (GMT 0)
Seems like the link is down?
Posted 5/8/2017 12:05 AM (GMT 0)
Psilo - I copied and pasted it and it works.

I will see if I can get a working link.


It's all Jemsek's secrets...lol.

So, I can't get a link to work either...so you just need to copy and paste.
Posted 5/8/2017 1:21 AM (GMT 0)

julymorning said...

birthdaysuit said...

julymorning said...

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.

July make sure it's the whole fruiting bodies and an alcohol hot water dual extract. Most mushroom suppliers are liars. Although, hot water will suffuce if it's the whole fruiting bodies.

BRANDS: Nootropics Depot is coming out with a 20:1 Dual extract which will be here soon

Real Mushrooms . com is another awesome brand

Nammex is awesome as well

Orvieda is good

I would stick with these.

It's Sagewoman herbs. I haven't found them misrepresenting anything I've bought from them yet. I'm sticking with them until something causes me to change. I need simplicity in my extremely stressful life. It already came in the mail today, and I'm going to have to try it.

That's a good herbal company, they use Nammex. I would think about getting a powder instead next time, less money and you get more.
Posted 5/8/2017 1:25 AM (GMT 0)

julymorning said...

birthdaysuit said...

julymorning said...

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.

July make sure it's the whole fruiting bodies and an alcohol hot water dual extract. Most mushroom suppliers are liars. Although, hot water will suffuce if it's the whole fruiting bodies.

BRANDS: Nootropics Depot is coming out with a 20:1 Dual extract which will be here soon

Real Mushrooms . com is another awesome brand

Nammex is awesome as well

Orvieda is good

I would stick with these.

It's Sagewoman herbs. I haven't found them misrepresenting anything I've bought from them yet. I'm sticking with them until something causes me to change. I need simplicity in my extremely stressful life. It already came in the mail today, and I'm going to have to try it.

That's a good herbal company, they use Nammex. I would think about getting a powder instead next time, less money and you get more. ?
Posted 5/8/2017 2:30 PM (GMT 0)
aonm.org.uk/sites/default/files/styles/LBC_Lifting the Veil_Common Sense JSC.pdf

There we go, try this link. And thank you for posting this! I haven't read the whole thing yet, but it looks interesting!
Posted 5/8/2017 6:04 PM (GMT 0)
Thanks! That's a pretty neat and informative slide show. Didn't know Jamsek gave lectures but he definitely seems to be reasonably intelligent
Posted 5/9/2017 2:26 PM (GMT 0)
Wow,

I had not realized this was such a common problem for Lyme sufferers. I will ask my Dr what code she used for insurance to approve the IVIG and post the answer here. It was prescribed before I knew the SFN dx. Although she may have learned the dx from my Neurologist before I did. I assume that Lyme was not the code of course.
Posted 5/30/2017 1:31 PM (GMT 0)
Several people had asked what dx and codes were used to get the IVIG treatment approved, both in this string and another that I could not find. The dx codes were 661.89; motor neuropathy with multiple conduction block and 662.9; polyneuropathy unspecified.

The clinical history she included:

"Edward is a 51 year old male that has presented with clinical symptoms including limb weakness, both proximal and distal. Severe disturbances in sensory including pain, tingling and numbness in both his hands and feet. He has had significant gait disturbances, as well as neurocognitive and behavioral complaints. Edward has had progressive neuropathic and dysautonomic complaints for over five years that have been worsening significantly, for over the past 48 months. He has been previously treated symptomatically without benefit, and is not a candidate for immunosuppressive medications because of known toxicity and susceptibility to infection based upon immune deficient status.

Edward has been diagnosed with multiple idiopathic neuropathies, small and large fiber axonopathy, severe small fiber neuropathy affecting both autonomic and sensory fibers and these neuropathies have been disabling his ability to work and go about his life.
EMG (attached)
Edward's study reveals evidence of chronic, length dependent, axon loss and demyelinating peripheral neuropathy"

I have completed the first round of treatments last Friday and will continue four treatments, once a month for six months and then asses.

I hope this might help some of you that feel this treatment would be helpful to get it approved.

Good Luck,
Ed
Posted 12/21/2017 1:47 PM (GMT 0)
HI EVERYONE AM NEW TO THIS GROUP.I WOULD LIKE TO SAY THAT I HAVE BEEN TREATING LYME AND BARTONELLA FOR OVER TWO YEARS.MY BIGGEST COMPLAINT IS THE SMALL FIBER NEUROPATHY THAT CONTINES TO GET WORSE. HAD TWO PUNCH BIOPSY 3 YEARS APART THE FIRST ONE WAS AT 10 CENTINMETERS AND I JUST HAD ONE DONE IN MARCH AND ITS AT 1.5 CENTENMETERS THIS IS MEASURING NERVE FIBERS NORMAL IS 15 CENTENMETERS.SO YOU CAN SEE IT CONTINUES TO GET WORSE.I JUST STARTED IVIG 3 MONTHS AGO. SO FAR HAD 3 TREATMEATS WITH MY 4TH THIS WEEK.MY NEUROLOGIST SAYS THAT YOU WILL SEEN SOME IMPROVEMENT DURING 4TH TREATMEAT.MY NEUROLOGIST DOES NOT BELIEVE IN LYME IN CO INFECTIONS.I LIVE IN MASS AND DOES ANYBODY NO A NEUROLOGIST THAT BELIEVES IN LYME AND CO INFECTIONS
Posted 12/21/2017 3:49 PM (GMT 0)
Papabear,

You can email me and I will give you the name of my Neurologist at Brigham & Women's Faulkner Hospital in Boston

Ed
Posted 6/9/2018 2:49 PM (GMT 0)
Shutterguy,
I sent an email to you last night asking for the name of your Lyme literate neurologist in Boston that does IVIG. My 25 year old son is quite ill with Lyme and Bart and I believe based on some preliminary tests, may need IVIG treatment.
I greatly appreciate your help.
Thanks
Sue
Posted 6/9/2018 5:02 PM (GMT 0)
Hi abkmom24 - welcome to our community.

I'm sorry your son is dealing with lyme and Bart infections.

How long has he been treating?
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