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Update: IVIG Approval and Small Fiber Neuropathy (SFN)

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Posted 6/9/2018 12:29 PM (GMT -5)
Hi Girlie. Thanks for welcoming me to your community.

My son became moderately ill last September. We must have gone to over 20 doctors in the Boston area between Sept - December and they all said he was crazy.

We received positive Lyme tests back from an LLMD (Galaxy and Igenex) for Lyme and Bart.
He is not getting better on Antibiotics and his health is declining.

He is being tested for SFN and Autoimmune Nervous system response to the infection and may need IVIG. One test has come back positive and we are just waiting for the SFN punch test results.

How are you doing and what is your treatment?
Thanks and wishing you only good health!
Posted 8/10/2018 9:30 PM (GMT -5)
I have chronic Lyme and Bartonella but My first symptom was SFN as well. Symptoms are worsening and my neuro says take more gabapetin and my Lyme doctor has put me back on antibiotics when the burning pain came back but it doesn’t seem to be helping. I actually think things are worse. I have fought for ivig but that doesn’t seem to be the route they want to take. I would love the name of the Boston neurologist. I have also read that if certain antibodies were present I could possibly be approved for ivig. I saw a neuro/rheum at Hopkins since I’ve had autoimmune processes effected, but he didn’t seem to have any answers. Any help you could give would be great. Thank you!
Posted 8/11/2018 11:43 AM (GMT -5)

Joyb4 said...
I have chronic Lyme and Bartonella but My first symptom was SFN as well. Symptoms are worsening and my neuro says take more gabapetin and my Lyme doctor has put me back on antibiotics when the burning pain came back but it doesn’t seem to be helping. I actually think things are worse. I have fought for ivig but that doesn’t seem to be the route they want to take. I would love the name of the Boston neurologist. I have also read that if certain antibodies were present I could possibly be approved for ivig. I saw a neuro/rheum at Hopkins since I’ve had autoimmune processes effected, but he didn’t seem to have any answers. Any help you could give would be great. Thank you!

Hi Joy - welcome!

I’m sorry you suffer with the nerve pain... I have that too.

So it went away for awhile after treating your infections but has now come back?

This will bump the thread up for more views - I hope you are able to get the IVIG.
Posted 8/11/2018 12:13 PM (GMT -5)

Georgia Hunter said...
...............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 must have missed this three page post this spring, good stuff. Ahh....the evil Krebs cycle. It is odd how these infections can effect the choline part of Krebs sometimes in opposite ways. There was a long post last fall/winter on supplementing choline to rid lymies of the Alzheimer/Parkinson symptoms (fog/memory/tremors). It had some followers which added choline seemed to help. But this can backfire in people with an excess of this, as some do.

After goggling this to no end last year, it seems both excess and shortage of acetylcholine can have similar muscle reaction/moment symptoms. Like always, midrange is what we need.

Smokers feel the effects of temporarily blocked acetylcholine receptors. This is what nicotine does at these receptors - depolarization. Acetylcholine is excitatory on skeletal muscle; the electrical response of depolarization from nicotine is fast and short-lived. Benadriyl also works this way.

Post Edited (astroman) : 8/11/2018 11:16:43 AM (GMT-6)

Posted 8/11/2018 12:23 PM (GMT -5)

Joyb4 said...
I have chronic Lyme and Bartonella but My first symptom was SFN as well. Symptoms are worsening and my neuro says take more gabapetin and my Lyme doctor has put me back on antibiotics when the burning pain came back but it doesn’t seem to be helping. I actually think things are worse. I have fought for ivig but that doesn’t seem to be the route they want to take. I would love the name of the Boston neurologist. I have also read that if certain antibodies were present I could possibly be approved for ivig. I saw a neuro/rheum at Hopkins since I’ve had autoimmune processes effected, but he didn’t seem to have any answers. Any help you could give would be great. Thank you!

Just curious if you had your immune lymphocyte levels tested since your lookimg into IVIG. These would be B cell are immunuglobuline antibody cells, the basis for developing organ or illness specific antibodies. Its odd how b cell compromised people's remaining b cells can "go postal" and turn into autoimmune action.
Posted 8/11/2018 12:25 PM (GMT -5)
Yes, I had numbness in toes as my first symptom in March 2017 then burning pain not only in my feet but in my face, ears, and torso in april/may 2017. A skin biopsy from April 2017 showed I had SFN. Raynauds also began in April 2017, so autoimmune issues present as well. I started treatment for lyme/bart in June, and numbness has not gotten any better but no worse, and the burning went away. I stopped antibiotics in February 2018 and continued to battle fatigue and headaches at times but overall felt better except for the numbness. At the end of July, I had sudden increase in numbness in my feet and the burning has returned. Lyme doctor put me back on bactrim/zithro last week, but so far I've noticed no change. Its just so hard to know if this is the ups and down of lyme/bart, the result of infection returning, or an autoimmune/neuro response which is why hearing the story about a lyme neuro in Boston sparked my interest. I just don't know what to pursue....more anitibiotics?? IVIG?? Could boosting my immune system be making things worse if my neuropathy is an autoimmune response? I'm just so tired of being my own advocate and trying to figure things out and knowing where to go and who to see. Most doctors just want to mask the symptoms and have no interest in figuring this thing out with me. I read so many contradicting things. I have faith that things will eventually get straightened out, but I want to be proactive in this. Thank you for reading this saga. confused
Posted 8/11/2018 12:57 PM (GMT -5)
IVIG?? Could boosting my immune system be making things worse if my neuropathy is an autoimmune response?

Its confusing, you can google using IVIG to sooth autoimmune too. And help active lyme.

IVIG is used for neuro issues from the very few good immunologists out there.

Then you read the opposite that says dont do this as it can make it worse- this is usually assumptions though, not actual cases.

Im 50/50 on this IVIG and doing more immune cell cross testing seldom done here (i'm under-range post lyme treatment). Only live once. Im greedy and want 100% recovery.

What few people who did IVIG here in the past, none came back to warn us about bad effects, so Im guessing it went well for them.
Posted 8/11/2018 1:32 PM (GMT -5)
Thank you astroman, I appreciate your thoughts. I want 100% recovery as well, and will keep pursuing answers to this beast of a disease. It's sounds like IVIG is worth revisiting at least, but it's going to be a fight to get my doctor to pursue it as well as my insurance to cover it. I put it on the shelf for awhile since my neuropathy wasn't worsening, but that has changed and the thought of this burning pain spreading and worsening is frightening.
Posted 8/11/2018 1:55 PM (GMT -5)
Since my immune cells have repeatedly been low, I'm checking other possible cause besides lyme, to be on the Safe side. We lymies get caught in lyme mode and forget other possibilities that should be crossed off.
Posted 8/11/2018 3:30 PM (GMT -5)
The paediatric LLMD Dr J (Connecticut) recommends IVIG for some of his Lyme patients.
Maybe you could find some info on him and when he thinks it’s warranted.
Posted 1/8/2019 8:55 AM (GMT -5)
I had my three month appointment with my LLMD last night. I'm back to 90% again, but still with the same lingering neuro issues. She brought up IVIG for the first time and referred me to the same Dr PN at Faulkner Hospital in Boston named in this tread. She also added a ton Neuro and Autoimmune labs to my usual CMP, CBC, Total D3, and Candida tests to have for my first appointment with Neuro. The list of tests totaled over $14k. Hopefully BCBS contract will cut this in half, but until I hit my $5525 deductible its all out of pocket. 8*(

I'll call for an appointment today. My research into this Neuro showed several addresses for his office. Do any of you that have seen him gone to an office not in Boston (Faulkner Hosp in Jamaca Plains). He was also listed in Worcester and South Weymouth MA which are easier drives.
Posted 1/28/2019 10:53 AM (GMT -5)
Just got my test results back and many of the Immuno related tests were well below range. I'll post results tomorrow. Good news is that the BCBS contract negotiated rates reduced my cost to only $875.97.

Maybe now they will allow me to make an appointment with the neuro.
Posted 7/12/2019 12:16 PM (GMT -5)
Diagnosed small fiber nerve peripheral neuropathy ( non diabetic)
Burning Feet sensation particularly at night, bedtime laying in bed
Pako Lab biopsy showed 5.6 fibers/ mm
Took Metanx- Ineffective “ Snake Oil”
Vitamin B12 supplement
Anyone with suggestions beside
Lyrica etc ( Death prescription) to
Reduce/ eliminate “ burning feet”
Sensation ?
Posted 7/12/2019 3:15 PM (GMT -5)
Welcome to our forum azone

Sorry to hear you have SFN.

I haven’t been diagnosed with it but have had nerve pain for the past 6 years.

Have you tried a prescription topical nerve pain?

My LLMD (knowing I don’t want to take Gabapentin or Lyrica) wrote a script for the topical.
I haven’t used it consistently - so can’t say how effective it is. The few sporadic times I used it - it did seem to help somewhat.

It has Gabapentin, ketamine and a few more pain killing drugs.
Posted 7/15/2021 5:39 PM (GMT -5)

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.

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

https://htpt://www.lindbergnutrition.com/promog/featuredarticle.asp?id=61&storeid=1c7a08050b8f4419bffba945004ca5d1

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

It's interesting you say this. I'm still in search of what's causing my sweat gland SFN, and one of the only things I tested positive for were phosphatidylserine antibodies by my rheumatologist. Though she said it didn't mean anything without a positive ANA or other signs which I didn't have.

I'll take a look at the articles you posted. Do you also know any research articles on the subject? I'm up for reading the literature. Thanks
Posted 7/15/2021 8:14 PM (GMT -5)
twibar84,

Georgia Hunter doesn’t come on frequently. If he doesn’t respond to this inquiry, click on his name and send him an email. His email is enabled.
Posted 7/16/2021 7:15 AM (GMT -5)
twibar these idiopathic sfn cases are usually autoimmune/inflammatory. If you are showing positive for a suspect antibody thats a telling sign right there. ANA is nonspecific and there is no conclusive autoimmune test for sfn, they dont fully understand the disease pathways and there are multiple. I'd suggest finding a neuro who understands this stuff. Most of the ones everyone goes to are in the northeast. Thats if you want to go the IVIG route.

Others have had success treating the source of the inflammation, be it infection, diet, microbiome, etc
Posted 7/16/2021 11:18 AM (GMT -5)

WalkingbyFaith said...

Georgia Hunter doesn’t come on frequently. If he doesn’t respond to this inquiry, click on his name and send him an email. His email is enabled.

Thanks for the headsup! I appreciate it.

dcd2103 said...

wibar these idiopathic sfn cases are usually autoimmune/inflammatory. If you are showing positive for a suspect antibody thats a telling sign right there.

Thanks very much for the feedback. FWIW I also have low white blood cell count and globulin, and slightly high A/G ratio. But again was told all this probably doesn't mean any by my docs. Though combined with the positive phos-serine antibody I think it's starting to paint a murky picture.

I'm applying to a multi-disciplinary program at a reputable hospital in my city, hoping to get in.

I also made an appt to see an LLMD with the main intent of getting tested through Igenex. I did have a tick bite 12+ years ago, so I think Lyme/co-infections are unlikely but who knows. Never had a bulleye rash or any typical symptoms.

Thanks again.
Posted 7/16/2021 11:23 AM (GMT -5)
“ I also made an appt to see an LLMD with the main intent of getting tested through Igenex. I did have a tick bite 12+ years ago, so I think Lyme/co-infections are unlikely but who knows. Never had a bulleye rash or any typical symptoms. “

Seeing a LLMD is a good idea considering you did have a tick bite over 12 years ago that went untreated.

Will you post your results here on the forum
Posted 7/16/2021 11:29 AM (GMT -5)
[quote

Thanks very much for the feedback. FWIW I also have low white blood cell count and globulin, and slightly high A/G ratio. But again was told all this probably doesn't mean any by my docs. Though combined with the positive phos-serine antibody I think it's starting to paint a murky picture.

I'm applying to a multi-disciplinary program at a reputable hospital in my city, hoping to get in.

I also made an appt to see an LLMD with the main intent of getting tested through Igenex. I did have a tick bite 12+ years ago, so I think Lyme/co-infections are unlikely but who knows. Never had a bulleye rash or any typical symptoms.

What is > phos-serine antibody. Is this the correct spelling?

Thanks again.

-----------------------------------------------------------------------------

"low white blood cell count and globulin, and slightly high A/G ratio"

Same here, it never recovered to normal levels. You know what Immune Drs do? Pretty much nothing until you constantly catch colds then your on IGIV forever.

You prob have low Igg and or low Iga immunoglobulins too. Low B, or T cells too.

There is literally no one who does anything about this or knows anything about it.

Continued low cd57 is what led me down this investigative path.
Posted 7/16/2021 11:49 AM (GMT -5)
I’m assuming phos serine is short for phosphatidyl serine
Posted 7/16/2021 12:09 PM (GMT -5)

Girlie said...
I’m assuming phos serine is short for phosphatidyl serine

Yes exactly. Sorry about that. I can never spell it correctly and tried a shorthand.

Phosphatidylserine antibody, which apparently is a type of antiphospholipid antibody. Though I don't think my condition is related to "antiphospholipid syndrome", which has more to do with cardiac issues and blood clotting.

And yes I'll definitely post my results here once they're in. Could take a while though, as I'm considering delaying the LLMD/testing (expensive) until I hopefully see the doctors through that hospital program. Would hate to spend $2000-$4000 on LLMD/Igenex only to find out this is actually something autoimmune (or other) that my current docs didn't find.
Posted 7/16/2021 12:13 PM (GMT -5)
“ Would hate to spend $2000-$4000 on LLMD/Igenex “

Holy cow! Is that what the llmd charges for an appt and testing?
Posted 7/16/2021 12:15 PM (GMT -5)

Girlie said...

Holy cow! Is that what the llmd charges for an appt and testing?

It's $500 just to see the LLMD for 1 hr. Then hopefully he will help me order testing. The tests can range from $500-$3000 I think, depending on what panels are ordered. :/
Posted 7/16/2021 12:32 PM (GMT -5)

twibar84 said...


Yes exactly. Sorry about that. I can never spell it correctly and tried a shorthand.

Phosphatidylserine antibody, which apparently is a type of antiphospholipid antibody. Though I don't think my condition is related to "antiphospholipid syndrome", which has more to do with cardiac issues and blood clotting.

And yes I'll definitely post my results here once they're in. Could take a while though, as I'm considering delaying the LLMD/testing (expensive) until I hopefully see the doctors through that hospital program. Would hate to spend $2000-$4000 on LLMD/Igenex only to find out this is actually something autoimmune (or other) that my current docs didn't find.


A lot of people w/ SFN make rogue antibodies. WashU has a panel (the TS-HDS and FGFR4 sp?) antibodies that they claim are specific for SFN, but there arent really any other definitive autoimmune tests for SFN. It's about proving autoimmunity.

Here's a good paper on it wrt to dysautonomia diseases in general (of which SFN is one). Antibodies are just markers, and you'll notice that they talk about testing for other antibodies, even for diseases you dont necessarily have, knock on wood, to establish a pattern of autoimmunity. The most highly correlated antibody to SFN they claim is the antiphospholipid antibody (76%). Doesnt necessarily mean you have APS.

https://www.healthrising.org/blog/2018/08/13/chronic-fatigue-syndrome-pots-fibromyalgia-autoimmune-dysautonomias/

Post Edited (dcd2103) : 7/16/2021 11:35:06 AM (GMT-6)

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