Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
Has anyone ever heard of this? My primary care dr brought it up and wants to to discuss it with my LLMD. I have never heard of it before and I don't totally understand how it works either.
I have to go in on Friday for an Immunoglobulin panel-its a fasting blood test.
Any info on this would be appreciated.
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
Anyone? There has been talk about this on other Lyme sites.
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
I'm sorry no one has responded to you. I know there are some people from this site who are on or have been on IVIG. I suggest you do a search (the search button is at the top of the page) for IVIG or Immunoglobulin and you should come up with some previous discussions about it.
posted
IVIG reportedly 'cured' 3 tick borne disease cases but is "experimental" and not offered by HMOs w/o congressional persuasion or act of God. Possibly because IVIG is expensive.
Although "safe" and "sterile" IG can in theory carry HIV & Hep B. But I am unaware of anyone successfully convincing a court that their HIV or HEP B was from IVIG.
I had eleven rounds of IVIG for "Guillain Barre" 1997-1999 (1 gram/kilo body wt). It gave me temporary & partial relief of life threatening paresis but I always relapsed...until I received plan- un authorized oral surgery for jaw infections and IV abx for Lyme!
Which my HMO disapproved.
My last IVIG was 5/10/99. After that I did not need IVIG for life threatening paresis because I was able to better manage my paresis with IV abx.
When I discontinued IV antibiotics in 1999, 2000 and 2002 each time I lost strength and could have gone back to my HMO for IVIG. Instead I resumed IV antibiotics, and rebounded.
Since July 4, 2003 I have been entirely off IV antibiotics. By God's grace I've make slow and steady gains on oral antibiotics. A recent Rife treatment has apparently produced benefits too.
IVIG boosts the immune system. If a Lymite is not getting well by other methods perhaps IG might make a difference. Or THE difference.
My Camp A HMO instead administered three days' IV prednisone.
THAT made me bedbound in the short term and may have given the bugs permanent residency status.
Yet if a Lymite got HIV or Hep B from IG I would not put it past a medical review board to judge that "substandard."
If anyone knows a LLMD who uses IVIG to treat LD please email me.
-------------------- Neil Posts: 697 | From Tucson, AZ USA | Registered: Apr 2002
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Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
Thanks guys for the information. I am not responding to any antibiotics at all so I am not sure where else to go right now. We just thought this might be something worth looking into.
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Sorry I didn't see this before--just skim the headlines of posts sometimes.
I get 5 grams either every other week, or every week if needed. I drip it very very slow to the point of yawning boredom, so I won't have side effects, and I use gamunex, which has no salt or sugar. I have reactions to the ones with salt and sugar.
I have found it very very helpful but surely it is adjunctive, not curative. I think it helps in a couple ways: 1) if your HLA subtype is the kind that doesn't do well with lyme, you're getting a smorgasbord of others and so your autoimmune response will be dampened 2) It has antibodies to everything else that might be piggybacking on your lyme-suppressed system, so your beleagured body can have a bit of a rest. IE you are getting the successful antibodies of thousands of donors.
So I find, well it's been over a year that I've been doing it, but I find it helps my energy overall.
My amounts however are relatively tiny. In fact the 5 gram bottle is amusingly small.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
Hi- I receive IVIG for my low platelet count. So far I have received 2 infusions -one in Jan & one in Feb-they take 8 hours for each treatment. I have never heard of it for LD and they have not really helped my platelet count much either -and yes they are very expensive.. my insurance bills show them costing about 7500.00 each.
Posts: 37 | From NJ | Registered: Feb 2006
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posted
for those of us not responding to abx, ivig is suppose to re-educate the immune system, so that the abx can work.
I tried for 6 moths to get insurance approval for ivig, with no luck 4 denials
I hope you can get ivig. Have you been on iv abx??
I did better on iv abx than oral, and may start that again, but right now the LD is winning in me, and I'm surviving with rest and pain meds.
I wish you well!
Posts: 663 | From NH USA | Registered: Sep 2004
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Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
I cant qualify for IV antibiotics. We'll just see what happens I guess. I can hope that things improve really well.
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
I really hope you qualify. There are neurological conditions that qualify lymies as well (and in fact, it is being used for lyme, by Dr Katz in Connecticut, and was mentioned in Newsweek). I know of one lymie who got it for small fiber neuropathy (I think I have that term correct). So if you have a lot of pain, you may have that--a biopsy will show it.
Also, gamunex comes in as tiny as 2.5 gram bottles. THat would cost around $250 out of pocket. Not sure if that is beyond your abilities, but I find the small amounts do a lot of good. Also, I don't like higher amounts because it does increase blood viscosity and I can sense it doing so in me from my reactions. I don't think I'd tolerate the high doses that are given in other conditions.
Posts: 2276 | From united states | Registered: Jun 2004
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
I meant to post my note to Nal publicly, to let others benefit from my experience...
I have been on IVIG for almost a year now. I do 10 grams every week, or 20 grams every two weeks. I am Lyme positive, and i tested positive to a subclass 3 immune deficiency, which is what helped my insurance co. to pay.
It has not been curative, but it has definetely improved the quality of my life. I always get energy boosts from the IVIG, and just feel better over all for longer.
It makes a very obvious improvement every time with the fungal overgrowth problem related to taking abx. long term. It seems to clear it up overnight, without the toxic side effects of a lot of the anti-fungals.
Good luck,
A
Posts: 364 | From California | Registered: Sep 2005
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I've been on IVIG for over three yrs now ( 40 grams every three weeks)--and since I'm in the "Business", as they say--I can answer a lot of your questions regarding being a lyme patient and IVIG
The theories behind Gamma and Lyme are somewhat different than using gamma for neuropathies, supposed "autoimmune" diseases, immune deficiencies, ect.
I won't get into it here---since everyone's dx. is "somewhat different", but if you want to PM me , you can
Posts: 468 | From USA | Registered: Jul 2003
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posted
Hi- I am on my second IVIG treatment-had one in Jan & one in Feb-but not for the lyme disease but for my blood disorder ( ITP- no platelets). It is an 8 hour infusion in the hospital.. Can't say it helps my platelets for very long and have not noticed it helping the lyme symptoms either.. Natalie
Posts: 37 | From NJ | Registered: Feb 2006
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posted
I have been on IVIG for over 1yr, Dr K in CT increased it last yr to 40g every 2wks (115lbs) It is covered under the "MS" diagnoses, I don't think they cover for chronic lyme.
It is not a "cure" but it helps with everything. I also have the DR4 gene So the IVIG helps dampen that also. If you have any nerve/brain problems maybe go that route, call you ins and see what conditions they will approve it for. My friend with MG/Lyme gets it covered by Medicare under her MG dx.
Posts: 315 | From USA | Registered: May 2005
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