tag:blogger.com,1999:blog-7647112008052174649.post7545856298896396956..comments2024-02-24T20:45:18.066-05:00Comments on POTSgrrl: Why is IVIG not listed as a potential POTS treatment?Unknownnoreply@blogger.comBlogger4125tag:blogger.com,1999:blog-7647112008052174649.post-35401112486918874672012-09-13T22:09:46.399-04:002012-09-13T22:09:46.399-04:00Hi,
I just found your site by googling Lyme disea...Hi,<br /><br />I just found your site by googling Lyme disease and IVIG therapy. I have lyme disease and dysautonomia....took me about 13 yrs to get a diagnosis of Lyme and dysautonomia. Most of us with Lyme seem to have Orthostatic hypotension or POTS! It would be so greatly appreciated if you could put links to the papers which recommend ivig in dysautonomic nueropathy on your site? I am now contemplating going to Columbia or Cleavland clinic...I know what I have was triggered by lyme, what I dont know is whether or not I have a persistent infection or auto-immune disease(The jury is still out on that one).<br /><br />Dr. Mariam Katz has recently recommended ivig in Lyme Disease but the chances of it being covered at this point is slim. Thank you so much for this information! It could help so many people. Any other info you could give me would be great.<br /><br />Thank you,<br />Melissa :)melissahttps://www.blogger.com/profile/17248098963422304764noreply@blogger.comtag:blogger.com,1999:blog-7647112008052174649.post-25328318012668050782012-01-11T12:26:04.892-05:002012-01-11T12:26:04.892-05:00In response to the Anonymous post above...
Actuall...In response to the Anonymous post above...<br />Actually, IVIG is much more than $4000 per dose. The price varies based on supply and demand (and market manipulation by big pharma) but my doses have cost between $10,000 and $16,000 per monthly dose. However, if you have had full blown POTS and you are spending weeks at a time in the hospital, you are totally bedridden and taking dozens of different medicines trying to deal with your symptoms, $10,000 a month to feel really great is cheap, and for some people, definitely worth it. It's all relative. If you only have mild POTS and you can still work and socialize and do "normal" things, then spending that much money probably doesn't make sense. Just like any drug, the pros an cons have to be considered on a case by case basis.<br /><br />Same thing with the risk. I think you oversimplify and overstate you case when you say "whenever you receive blood products there is a big risk." IVIG has been used safely on millions of people over the past 30 years. It is tested for hepatitis, HIV and other known dangerous pathogens. It is also heat treated, acid washed, etc. Yes, of course there is a risk, but I wouldn't consider it to be "big." An again, the risks and benefits have to be weighed on a case by case basis. I am not saying IVIG is for everyone. I am just saying, why is this drug not even being mentioned in the POTS literature as a treatment option, even if it's only mentioned as a drug of last resort? Let's at least get this info out there in terms of a treatment for some POTS patients, so they can disucss the risks and benefits with their doctor. For me, the risk is worth it. My symptoms were unbearable and not responding to other drugs, therapies, dietary changes, etc. And since I have had 2 doses of IVIG, I went from bedridden and symptomatic 100% of the time, to able to go out to the food store and the movie theatre and cooking up a storm for hourseguests. My life is so much better because of IVIG, and I just want the rest of the POTS patient population to have access to that drug if they and their doctors deem it appropriate - but most people, including doctors, don't know about it and don't know enough about POTS to realize IVIG may help some cases of POTS.<br /><br />I would bet good money that in a few years, this will be a more standard treatment for POTS.POTSgrrlhttps://www.blogger.com/profile/00965527248154225467noreply@blogger.comtag:blogger.com,1999:blog-7647112008052174649.post-22189159788682202822012-01-09T12:13:46.954-05:002012-01-09T12:13:46.954-05:00IVIG runs about $4000 a pop. Most doctors consider...IVIG runs about $4000 a pop. Most doctors consider it to be used as a "last resort". IVIG is made from blood of blood donors and is considered risky in itself. Whenever you recieve blood products there is a big risk.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7647112008052174649.post-62669287504972156002012-01-08T21:47:48.463-05:002012-01-08T21:47:48.463-05:00Fantastic post! I'm definitely going to resear...Fantastic post! I'm definitely going to research this with you!! Thanks for the help and ideas!Jenniferhttps://www.blogger.com/profile/01036264104450175553noreply@blogger.com