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» LymeNet Flash » Questions and Discussion » Medical Questions » Lasting positive effects from IVIG?

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Author Topic: Lasting positive effects from IVIG?
Told you I was sick
LymeNet Contributor
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Hello.

Anyone out there find repair of autonomic nerves/small fiber/axon damage via long term use of IVIG?

My severe neuropathy -even with normal IgG subclasses- permits full coverage by my insurer (I’m that sick). Heading into month 11 of IVIG infusions, and yet, the neuropathy continues. There has been some progress, but, definitely not what I had hoped. I once heard that if a damaged autonomic nerve fiber was to ever regenerate from such a therapy, that it would take 18 months.

Really just hoping to hear ssuccess stories of others using long-term IVIG. If helpful, I receive mine intravenously.

Many thanks, friends,
Told you...

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susank
Frequent Contributor (1K+ posts)
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Not answering your question directly - but might I suggest reading Dr Doidge's book, The Brain's Way of Healing". Neuroplasticity. Another doctor in the book - cannot remember name - has a website Neuroplastix. Good stuff.

--------------------
Pos.Bb culture 2012
Labcorp - no bands ever
Igenex - Neg. 4 times
With overall bands:
IGM 18,28,41,66 IND: 23-25,34,39
IGG 41,58 IND: 39
Bart H IGG 40

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Told you I was sick
LymeNet Contributor
Member # 35068

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susank-

so, so, so very kind of you to respond. Through my home infusion nurse, I am well aware of neuroplasticity and the various physicians/research scientists/etc. who call on its techniques to unite the body and mind in restoring health (ie A. Hopper’s dnr system). Although I could stand to have more harmony within, these techniques have not proven effective in my specific case (a damaged autonomic nervous system relies more heavily on the hope of stem cell transplantation, mHBOT, IVIG, etc. for neuronal regeneration than anything else).

Although it has not worked for me, it is wonderful if others can be helped by it. Thank you very much for your alternate suggestion, susank!

That said, I’d still be very eager to hear from those who found success in repairing autonomic nerve fibers after longer term therapy with IVIG (or even with the other modalities of stem cell transplantation or mHBOT).

Again...appreciate you, susank!

[ 03-26-2018, 11:16 AM: Message edited by: Told you I was sick ]

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unsure445
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I can't answer your question regarding IVIG but are you taking the herb Lions Mane?

According to my sons llmd, Lions Mane repairs damaged nerves, kind of like putting new blacktop down on a road that is covered in potholes.

It can take several months so don't expect to see changes in a few weeks.

It is also immune supportive, anxiety lowering, focus enhancing, and a mood booster....

--------------------
unsure445

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Lymetoo
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Praying for relief of symptoms, "Told You" ..

[group hug]

--------------------
--Lymetutu--
Opinions, not medical advice!

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Told you I was sick
LymeNet Contributor
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unsure-

Thank you so much for this helpful tip! I have heard of this herb in passing, but, never looked into it. I will definitely do so!

Lymetoo...I appreciate your kind wishes so much.

The neuropathy has lead to loss of function within the entirety of my GI tract. I need the 💜, so, thank you -both- again!!!

Told you...

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Sammi
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Told you I was sick, are you getting high-dose IVIG? Single-day or multiple-day infusions each month?
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Keebler
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-
So good to see Lion's Mane mentioned above. It's not an herb, rather a mushroom. And, as unsure says, can be very supportive of nerve fibers / repair.

It's been a favorite of mine to study, though, I've not had the access to it as I'd like. Perhaps it's time to adjust and lean more on mushrooms for a while. Always glad to see someone post about this.

The best researcher in this field is Paul Stamets.

You can learn how to tell a proper medical mushroom product from others that have not been grown, tended or processed correctly. He has excellent products, yet, if you get other brands, his research and instruction serves well to guide.


Also search to see his TED TALKS presentations.


http://www.fungi.com/about-paul-stamets.html

Paul Stamets

http://www.fungi.com/search-results.html#/?q=lion's%20mane

Lion's Mane products


Some background at Wiki:

https://en.wikipedia.org/wiki/Hericium_erinaceus

Hericium erinaceus (also called lion's mane mushroom. . . .


PubMed Search:

https://www.ncbi.nlm.nih.gov/pubmed/?term=lion%27s+mane+mushroom

Lion's Mane mushroom - 26 abstracts

https://www.ncbi.nlm.nih.gov/pubmed/?term=Hericium+erinaceus

Hericium+erinaceus - 158 abstracts


http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/119968

Medical Mushrooms - Links
-

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Told you I was sick
LymeNet Contributor
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Sammi-

Sending you a quick PM now. Thank you so much!

Told you...

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Told you I was sick
LymeNet Contributor
Member # 35068

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Oh wise Keebler-

Many thanks for all of your legwork. I really appreciate your help!

Take good care, and thank you again.

Told you...

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sammy
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I was told you cannot repair extensive damage to autonomic nervous system.

My IVIG is approved for treatment of severe combined immune deficiency.

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Told you I was sick
LymeNet Contributor
Member # 35068

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sammy-

There remains the possibility that one’s autonomic nervous system (ANS) may be helped if the small nerve fibers that innervate the organs which the ANS controls are repaired. The science is still emerging with this. Take for example this article last year out of MGH:

“This is a proof-of-concept finding that dampening the body's immune system may be safe and effective for treating apparently autoimmune SFPN, a condition that most patients don't even know they have," says Anne Louise Oaklander, MD, PhD, director of the Nerve Unit in the MGH Department of Neurology and the senior author of a paper receiving advance online publication in Therapeutic Advances in Neurological Disorders. "This is the first treatment that has the potential to actually improve the nerve damage, not just block symptoms with drugs such as opioids that don't address its cause."

SFPN involves widespread damage to the tiny nerve fibers that carry pain signals and control internal functions such as heart rate, blood pressure and sweating. Patients often develop chronic pain, fatigue, weakness or fainting when standing, rapid heart rate or gastrointestinal problems. Common causes of SFPN include diabetes and chemotherapy-induced nerve damage, but this paper studied some of the 30 to 50 percent in whom no cause is found when they are first evaluated, leading to a diagnosis of "idiopathic" SFPN. Studies from Oaklander's group and others have suggested that some such patients have a previously undiscovered autoimmune condition.” (https://www.sciencedaily.com/releases/2017/11/171108155538.htm)


For individuals like me...it is the only hope (that we have) left. I was so hoping that there’d be others on lymenet in my position who had success stories about actual neuronal repair from IVIG. I am not special, but, do recognize that even within the greater Lyme/tbd community, my situation (symptoms) are highly unique. It’s mighty difficult to still feel so all alone in this nightmare, decades in.

Out of my inherent character, and selfishly doing so during this reverent time for many (Holy Week/Easter), I am shamelessly asking for anyone’s thoughts, well wishes, prayers, etc. (no messages needed). Just the thought of others’ positive energy right now could really do my 💚 well.


Many thanks, lymenet warriors,
Told you...

[ 03-29-2018, 06:45 PM: Message edited by: Told you I was sick ]

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