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
Posted by savebabe (Member # 9847) on :
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
Posted by Neil M Martin (Member # 2357) on :
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.
Posted by chamade (Member # 11472) on :
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.
Posted by achey (Member # 6284) on :
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.
Posted by cordor (Member # 9449) on :
I am just curious........ Neil-what is GBS? and Achey- what is CIDP?
Posted by stella marie (Member # 7216) on :
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.
Posted by savebabe (Member # 9847) on :
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
Posted by James Marschner (Member # 13073) on :
What about vertigo, hyperhidrosis (excessive sweating)muscle spasms.
Do they eventually go away? Or are they permanent?
Posted by achey (Member # 6284) on :
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 .
Posted by chamade (Member # 11472) on :
So were you eventually diagnosed as having a Lyme induced autoimmune disorder?
From what I understand IVIG is used to treat autoimmune disorders
Posted by achey (Member # 6284) on :
yes, I also have celiac disease and thyroid problems
Posted by JRachel11 (Member # 12891) on :
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.
Posted by sunnymalibu (Member # 9586) on :
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!
Posted by Neil M Martin (Member # 2357) on :
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.
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-!!!!!!!!!!
Posted by hshbmom (Member # 9478) on :
Please comment if you have experience w/ this treatment for neuropathy
Posted by lymebytes (Member # 11830) on :
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.
Posted by davidx (Member # 8326) on :
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
Posted by dmc (Member # 5102) on :
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.
Posted by Stoli (Member # 11175) on :
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!
Posted by Tracy9 (Member # 7521) on :
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?
Posted by Stoli (Member # 11175) on :
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.
Posted by Parisa (Member # 10526) on :
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.
Posted by imagine2 (Member # 3136) on :
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.