posted
I learned about the somewhat invasive treatment called IV IG today by my doc. Wow, looks expensive from what I read on google. BUT, DOES IT WORK?
I need feedback on this.
-------------------- Bullsye rash: 1994, tx w/ ABT, Symptomatic:1999 Hospitalization: 2004 Equivocol results (specialy lab) resulting in chronic use of ABT, herbs, etc ever since. Severity of symptoms continue to worsen intermittingly. Posts: 140 | From maryland | Registered: Oct 2006
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posted
My doctor brought this up at my last appt too actually...I haven't looked into it too much yet since we will be discussing it further at my next appt..What exactly is the reasoning behind why your dr. wants you to consider this?? I didn't really understand what it's for exactly..However, I do know that my virus titers are high, and he was mentioning it when we were going over those results..
Posts: 82 | From NJ | Registered: Mar 2011
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posted
I've spoke with Dr. K, the leading IVIG specialist in the nation (I think?), also in Lyme field.
Gave a detailed medical history and his conclusion was that he was not sure that 'active' lyme was correct diagnosis.
He even suggested that its possible to have a tetracycline induced depression and hinted this might be the case with me as my symptoms spurred around the same time of low dose doxy due to acne.
Granted, this was a conclusion based on email correspondence only, so of course to protect himself he had to be vague. Understandable.
A million tests were suggested before he would consider going any further. Most of these tests were meant to rule out other possible causes.
I plain don't have the funds for that, or to fly across country for treatments, so i haven't gone any further with the IVIG route.
From what I understand, IVIG is used to treat a persons malfunctioning immune system, hence boosting the bodies natural ability to fight disease.
Good idea, but the idea of having someone elses plasma injected into me kind of creeps me out.
Besides, how did our immune system become compromised? If we've had lyme bacteria and co-infections, of course our immune system is going to be a little smashed.
I've heard positive things about IVIG and not so positive. Again, i think it really depends on the person and what their bodies needs are.
there is someone on Lymenet that goes to Dr. K and i believe they are on IVIG. perhaps he will pop in and give you some better information about his experience.
I learned yesterday that my sub-class three (antibiodies) are 'significantly low'. The doc attributes my recurrent (MRSA) infections directly to these recent lab findings.
-------------------- Bullsye rash: 1994, tx w/ ABT, Symptomatic:1999 Hospitalization: 2004 Equivocol results (specialy lab) resulting in chronic use of ABT, herbs, etc ever since. Severity of symptoms continue to worsen intermittingly. Posts: 140 | From maryland | Registered: Oct 2006
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posted
My dd who has lyme/bartonella and an autoimmune disorder called PANDAS gets a high dose (1.5g/kg) dose of IVIG every 8 weeks. Her main symptom of PANDAS and bartonella is OCD. The first few IVIG's were before the lyme/bart diagnosis and the first two were nothing short of miraculous. (70-80% reduction in symptoms) it was when we stopped seeing progress with the IVIGs that we looked further into the possibility of lyme and got that diagnosis. Since starting Lyme treatment, she's been herxing like crazy, so I think we are on the right track. It is just a long ****ty road, but the IVIG has been helpful for her because she has auto-antibiodies. Dr. J, my dd's pediatric lyme specialist, and her PANDAS immunologist both agree that IVIG is beneficial when there is autoimmunity with LYme. So far there have been no complications with the treatment. She does take medications to prevent side effects from the treatment.
Posts: 41 | From Somewhere over the rainbow | Registered: Apr 2011
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momintexas
Frequent Contributor (1K+ posts)
Member # 23391
posted
I don't have any personal experience with IVIG - (I've just done a lot of reading and asking questions to others that have done it) but I know several that have gone that route and sadly the ones that got relief were only temporary. A couple got no relief and horrific side effects.
I have heard that IVIG is most beneficial to people with viral issues.
I have asked 2 different LLMD's and both said "NO" to IVIG and that it's just a temporary fix and not a cure.
Our immunologist is big on IVIG and he has told me that in his experience, it does not work on people with Lyme.
Low Sub-class three antibodies are common in people with chronic infections. As I understood it - once some of the infection is knocked down, those numbers will begin to go back up.
Again, I have no personal experience with it - just sharing what some others have told me. I'm not saying it doesn't work for everyone - just the ones I know.
Posts: 1408 | From Tx | Registered: Nov 2009
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posted
IVIg was a crucial part to my husband's recovery. However, his Lyme/Babesia expressed itself as an autoimmune condition, dermatomyositis. He has been off all antibiotics for almost two years now and is slowly weaning off the IVIg also.
I don't think IVIg on its own will treat Lyme disease. If someone has low IGG or an autoimmune condition, and they do IVIg with antiobiotics it can be very helpful.
Posts: 984 | From San Diego | Registered: Nov 2006
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