LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » IVIG??

 - UBBFriend: Email this page to someone!    
Author Topic: IVIG??
savebabe
Frequent Contributor (1K+ posts)
Member # 9847

Icon 1 posted      Profile for savebabe     Send New Private Message       Edit/Delete Post   Reply With Quote 
Has anyone done IVIG treatment for neuropathy?

I am just starting to learn about it, and I was wondering how long treatment is, how much does it cost, who does it, and can you take an oral med instead of IV?

Thanks

Posts: 1603 | From ny | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
savebabe
Frequent Contributor (1K+ posts)
Member # 9847

Icon 1 posted      Profile for savebabe     Send New Private Message       Edit/Delete Post   Reply With Quote 
I just found this;

"Some patients receive their immune globulin infusions by subcutaneous infusion (SCIG), with the medicine infused just under the surface of the skin over several hours."

So, I am guessing that IV isn't necessary?

Thanks

Posts: 1603 | From ny | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
Neil M Martin
LymeNet Contributor
Member # 2357

Icon 1 posted      Profile for Neil M Martin     Send New Private Message       Edit/Delete Post   Reply With Quote 
savebabe:

Others have asked this good question. Don't know the answer but IVIG dosed at 2 grams per kilo body weight (~90 grams for me) temporarily helped my neuropathy and paresis. That was good because at times I was too weak to properly breathe.

IG might be more helpful if combined with IV antibiotics. My neurologist did not believe in Lyme but treated me for GBS - after three rounds of IV steroids that made me weaker.



Please let us know how you do.

--------------------
Neil

Posts: 697 | From Tucson, AZ USA | Registered: Apr 2002  |  IP: Logged | Report this post to a Moderator
chamade
LymeNet Contributor
Member # 11472

Icon 1 posted      Profile for chamade     Send New Private Message       Edit/Delete Post   Reply With Quote 
Do a search, someone here mentioned a neuro in NY who treats lyme patients with IVIG.

Getting it covered by insurance will probably be difficult with sensory only neuropathy.

--------------------
Why me? Well, why not me???

Posts: 411 | From San Francisco, CA | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
achey
LymeNet Contributor
Member # 6284

Icon 1 posted      Profile for achey     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi
I'm doing IVIG. My original dx was neurological movement disorder from Lyme Disease. My insurance co wouldn't pay with that dx, though many insurance co will.

Well, after 21 months I had goten so ill from no treatment for neuro symptoms that dx changed to CIDP... then the insurance co listen after I failed an EMG.

I started IVIG in May. I get 4 infusions per month. Then improvement in my balance, swallowing, strength, coordination, etc has been miraculous! I read again too, and have no more seizure! Oh, no more chronic diarrhea either!

I am getting muscle strength back and my life.

Posts: 663 | From NH USA | Registered: Sep 2004  |  IP: Logged | Report this post to a Moderator
cordor
LymeNet Contributor
Member # 9449

Icon 1 posted      Profile for cordor     Send New Private Message       Edit/Delete Post   Reply With Quote 
I am just curious........ Neil-what is GBS?
and Achey- what is CIDP?

--------------------
Corinne

Posts: 529 | From Raleigh, NC | Registered: Jun 2006  |  IP: Logged | Report this post to a Moderator
stella marie
LymeNet Contributor
Member # 7216

Icon 1 posted      Profile for stella marie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Cordor- could be this....

CIDP-Chronic Inflammatory Demyelinating Polyneuropathy
http://www.ninds.nih.gov/disorders/cidp/cidp.htm

GBS- Guillain-Barre Syndrome
http://www.ninds.nih.gov/disorders/gbs/gbs.htm

As far as IVIG goes one of my docs have suggested this. I'm a bit skeptical.....if LD and other TBI's can't be screened out of the blood supply how in heck do I know what I'm being given.

Any one have answers, I'd love hear more.

--------------------
Stella Marie

Posts: 691 | From US | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
savebabe
Frequent Contributor (1K+ posts)
Member # 9847

Icon 1 posted      Profile for savebabe     Send New Private Message       Edit/Delete Post   Reply With Quote 
I have also thought about disease that may be passed through IVIG.

The last thing I need is another infection, while fighting this one.

Thanks

Posts: 1603 | From ny | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
James Marschner
LymeNet Contributor
Member # 13073

Icon 1 posted      Profile for James Marschner     Send New Private Message       Edit/Delete Post   Reply With Quote 
What about vertigo, hyperhidrosis (excessive sweating)muscle spasms.

Do they eventually go away? Or are they permanent?

Posts: 269 | From Valencia, CA | Registered: Aug 2007  |  IP: Logged | Report this post to a Moderator
achey
LymeNet Contributor
Member # 6284

Icon 1 posted      Profile for achey     Send New Private Message       Edit/Delete Post   Reply With Quote 
IVIG is filtered, stiralized (sp?) and purified

Yes, CIDP-Chronic Inflammatory Demyelinating Polyneuropathy

Vertigo is much improved...only occurs once of twice a week instead of all the time.

Muscles spasms are also almost gone. I do get some at night or in the morning in conjunction with growing new nerves, but they are minor compared to whre I used to be, and improving all the time.

I nevr had excess sweating problems, just night sweats from lyme and babsesia, though as my peripheral nerves grew back, sweating became painful for a while as my skin would sting due to the senation of sweating .

Posts: 663 | From NH USA | Registered: Sep 2004  |  IP: Logged | Report this post to a Moderator
chamade
LymeNet Contributor
Member # 11472

Icon 1 posted      Profile for chamade     Send New Private Message       Edit/Delete Post   Reply With Quote 
So were you eventually diagnosed as having a Lyme induced autoimmune disorder?

From what I understand IVIG is used to treat autoimmune disorders

--------------------
Why me? Well, why not me???

Posts: 411 | From San Francisco, CA | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
achey
LymeNet Contributor
Member # 6284

Icon 1 posted      Profile for achey     Send New Private Message       Edit/Delete Post   Reply With Quote 
yes, I also have celiac disease and thyroid problems
Posts: 663 | From NH USA | Registered: Sep 2004  |  IP: Logged | Report this post to a Moderator
JRachel11
Member
Member # 12891

Icon 1 posted      Profile for JRachel11     Send New Private Message       Edit/Delete Post   Reply With Quote 
Im using IVIG, I had Lyme induced Guillian Barre, which is now CIDP, I am seeing the top Neurologist at nYU who knows a lot about Lyme disease and I am approved my by insurance company to reive this therapy 5x a month for 2 years since I am paralyzed and my case is so severe.
Posts: 29 | From New York | Registered: Aug 2007  |  IP: Logged | Report this post to a Moderator
sunnymalibu
LymeNet Contributor
Member # 9586

Icon 1 posted      Profile for sunnymalibu   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
I've had IMIG and it helped me a lot. Everytime I go to my doctor now I ask her for it but she has not been able to get it for many months.

I would take IVIG anytime if I could get it!

--------------------
sunnymalibu

Posts: 192 | From california | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
Neil M Martin
LymeNet Contributor
Member # 2357

Icon 1 posted      Profile for Neil M Martin     Send New Private Message       Edit/Delete Post   Reply With Quote 
Happy to see this string. Have wanted to see such posts for years. Maybe not the first time it got posted.

Yes, Cordor, GBS is acute form of cidp. Thanks, stella marie for the link.

My 2 EMG tests showed nerve damage. IVIG can intro virus but to my knowledge no one has sued succesfully. IVIG infection is thought to be VERY rare.

Can anyone find for me how much hospitals get paid for ivig infusions? I have heard it is substantial. hospitals do not like to dx what is not found in Medicare's diagnosis related codes (DRG). Those dxs without a good DRG do not pay.

IVIG gave me temporary, partial relief from paresis. But none was offered until I was much weaker than I usually am on abx.

Please keep me posted, if IVIG alone or in combo with antibiotics is helpful over the long term.

[email protected]

--------------------
Neil

Posts: 697 | From Tucson, AZ USA | Registered: Apr 2002  |  IP: Logged | Report this post to a Moderator
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136

Icon 1 posted      Profile for CaliforniaLyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
My angel LLMD used IV IGG with a subset of Lyme patients he thought could benefit from it- not all Lyme patients would it be helpful for- anyway- he was picky about who got it and those people appreciated it, I know*)!*)! ALl who did get it did well with it- very bad off people usually-!!!!!!!!!!

--------------------
There is no wealth but life.
-John Ruskin

All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer

Posts: 5639 | From Aptos CA USA | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
hshbmom
Frequent Contributor (1K+ posts)
Member # 9478

Icon 1 posted      Profile for hshbmom     Send New Private Message       Edit/Delete Post   Reply With Quote 
Please comment if you have experience w/ this treatment for neuropathy
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006  |  IP: Logged | Report this post to a Moderator
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830

Icon 1 posted      Profile for lymebytes   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
Might want to do a search here on it. It seems to be an "if'y" thing - some say a 50-50 chance of success, other's had miserable long lasting side effects. Check out the search. I hoped it would work for me, but I have decided against it.

--------------------
www.truthaboutlymedisease.com

Posts: 2003 | From endemic area | Registered: May 2007  |  IP: Logged | Report this post to a Moderator
davidx
LymeNet Contributor
Member # 8326

Icon 1 posted      Profile for davidx     Send New Private Message       Edit/Delete Post   Reply With Quote 
Been on it for quite some time and have seen improvement from some of my neuropathy symptoms. Had some side effects when I first started but since then I have found it to be not bad (other than taking several hours per infusion).

-David

--------------------
Same nightmare, different day!

Posts: 401 | From East Coast | Registered: Nov 2005  |  IP: Logged | Report this post to a Moderator
dmc
Frequent Contributor (1K+ posts)
Member # 5102

Icon 1 posted      Profile for dmc     Send New Private Message       Edit/Delete Post   Reply With Quote 
I beleive Lymetwister & Tracy9 have recently done/doing it. Look for their posts when you do the search.

Search is above under the "post a poll" button.

Posts: 2675 | From ct, usa | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
Stoli
Member
Member # 11175

Icon 1 posted      Profile for Stoli     Send New Private Message       Edit/Delete Post   Reply With Quote 
For those who have been approved for IVIG, would you mind sharing what your official diagnosis is for which your insurance company approved treatment. My LLMD really wants me to do IVIG, but my insurance won't approve it. I have small fiber neuropathy, but normal punch biopsy results and EMGs.

Thanks!

--------------------
Carol

Posts: 38 | From Essex County, NJ | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521

Icon 1 posted      Profile for Tracy9         Edit/Delete Post   Reply With Quote 
I have been doing IVIG recently. My diagnosis is small fiber neuropathy, something probably many of you have, but it can only be diagnosed by a punch skin biopsy, through a neurologist or possibly a dermatologist.

It is a rare, serious, autoimmune disease that I happen to believe is very common among us Lymies. There is no cure but IVIG is the best treatment for holding it at bay and possibly reversing some of the symptoms.

I have a thread on here if you search "small fiber neuropathy" with a long list of articles.

It was a breeze to get it approved with that diagnosis. The cost is $10,000 per treatment. My first treatment was five consecutive days for the month of January, yes, that is $50,000 dollars. I had some reactions to the treatment, mainly because they kept infusing me at a speed that was faster than my body could handle.

I had it done at a Cancer Center. It was not a difficult or painful thing. However I kept having anaphylactic type symptoms as they turned the infusion rate up. Right now I am trying to get another round scheduled with a strict order for them NOT to infuse me at a rate higher than 75, the rate at which I never reacted.

After all the reactions following the five day protocol, I changed to a two day a week every other week protocol. The first day the nurse really got me cranked up without my knowlege to an infusion rate of 200. Though I felt short of breath, I was wheeled out of the hospital and the symptoms did not REALLY hit until I walked into CVS across the street and walked to the prescription counter.

That was enough stress on my body to wreak havoc. I went over to the blood pressure machine and an ambulance had to be called as I was having anapylaxis again. The next day the cancer center couldnt' reach my LLD and refused to infuse me. They said my body was rejecting the donor plasma and that they didn't think I could do IVIG.

I disagree. I think they cranked up the speed so high so they could get thier butts home that they completely overloaded me. I talked with my LLD today and said I really want to try it one more time and need him to write an order to NOT GO OVER an infusion rate of 75,and to even switch brands of IVIG as that is another common practice when someone reacts.

IVIG is blood plasma that contains the antibodies of over 1,000 different donors in every dose. It is the best treatment for small fiber neuropathy.

Stoli, I didn't know SFN could be diagnosed with a negative punch skin biopsy. I thought that a positive one was necessary to make the diagnosis. I have a friend I was certain had it but his biopsy came back negative. How did you get diagnosed wth a negative punch skin biopsy?

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005  |  IP: Logged | Report this post to a Moderator
Stoli
Member
Member # 11175

Icon 1 posted      Profile for Stoli     Send New Private Message       Edit/Delete Post   Reply With Quote 
Well, I think the neurologist made it as a clinical diagnosis based on my symptoms and essentially ruling everything else out. I only have symptoms on my arms, but apparently samples can only be taken from the legs. Obviously, without the positive biopsy results, insurance won't pay for it so the diagnosis does me no good.

--------------------
Carol

Posts: 38 | From Essex County, NJ | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
Parisa
LymeNet Contributor
Member # 10526

Icon 1 posted      Profile for Parisa     Send New Private Message       Edit/Delete Post   Reply With Quote 
Tracy,

Make sure the nurses are prepping you right. My husband gets Gamunex and it is very important to infuse dextrose before and after the IVIG infusion. We have visiting nurses and always have to remind them.

Ask the nurses to show you the rate whether it's a dial or machine pump so you it can be a little more under your control and you will know if they speed it up. Tell them you have all day and would rather take it slow than have any more bad episodes.

I don't know which brand you are getting but I do know there is one brand that has sucrose in it that causes bad reactions.

Posts: 984 | From San Diego | Registered: Nov 2006  |  IP: Logged | Report this post to a Moderator
imagine2
LymeNet Contributor
Member # 3136

Icon 1 posted      Profile for imagine2     Send New Private Message       Edit/Delete Post   Reply With Quote 
Tracy,
Your experience with the overloading nurse is totally unacceptable.Im so sorry that you had to go through that.

Your dr. needs to write specific orders not to go over 75. We found out that the nurse was overloading my daughter as well.

We spoke to the Director of the dept. and changed nurses. Her immunologist also faxes my daughter the exact orders she is requesting so my daughter can follow up that the treatment is being done properly.

Posts: 677 | From Virginia | Registered: Sep 2002  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.