posted
This seems like a good opportunity for anyone who HAS used IVIG to comment on the reasons and whether it helped.
I'm interested because of the evidence that in some late Lyme patients self-antibodies develop which preferentially target the brain and nervous system, just like the bugs.
If those were to become an independent source of disease, IVIG as I understand it (strictly from research, not personal experience) might be a logical choice of therapy, because it helps suppress self-antibodies without wrecking the patient's resistance to infection.
Does that scenario correspond to any real life stories here on Lymenet?
Paul S.
Posts: 199 | From Santa Cruz, CA | Registered: Oct 2004
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Intravenous immunoglobulins (antibodies).
They are obtained from many donated units of blood...hence, cost a bundle.
Effective?
Arch Phys Med Rehabil. 2003 Sep;84(9):E34-E35. Related Articles, Links
Return of muscle strength and function after use of intravenous immunoglobulin for Lyme disease-associated acute demyelinating polyneuropathy.
Patient: A 58-year-old man with babesiosis and Lyme disease. At follow-up 8 weeks later, muscle strength had fully returned. Discussion: This case illustrates that Lyme disease-associated demyelinating polyneuropathy may be treated with IVIG. The potential use of IVIG in this population is based on its efficacy in those with acute demyelinating neuropathy of alternative etiologies. Conclusion: IVIG can be considered as a treatment option for demyelinating polyneuropathy associated with Lyme disease.
PMID: 13680780
The above link no longer works which is very puzzling since it was a ``cut and paste'' on my part. If whoever is reading this has access to a hard copy of this journal, I urge that person to find it and copy it. The Sept. 2003 issue of that journal may be found in hospital or medical school libraries.
There are other abstracts on PubMed that indicate IVIG does not work. But...the number of "variables" is an important factor. IVIG given to some teenagers reacted differently.
Yea...anybody count the # of spirochetes and possible co-infections in the teens first?!
Gimme a break.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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posted
I received IVIG for demyelinating polyneuropathy ("Guillain Barre' syndrome") 11 times, 1997-1999.
5/17/99 I began IV antibiotics for Lyme (paying out of pocket) and quit taking IVIG.
IG helped my paresis short term but not my flu like symptoms, cognitive disorders or rashes. IG alone did not give progressive, cumulative strength benefits that IV and oral antibiotics did - and do.
My HMO offered IVIG only if my strength failed to the point where I could not get out of a chair using only my legs. By then I could not hop on one foot or walk on my heels and I had VERY little stamina.
The HMO did not want me THAT weak lest my chest muscles fail and I suffocate. Which occurred 7/97. By God's grace someone was nearby and I received life saving help moments prior to suffocating due to paresis of the chest muscles.
So far oral and IV antibiotics have keep me too strong to qualify for my HMO's offer of IVIg.
For me IVIG was more expensive, less effective and potentially more dangerous (they can't guarantee it will be free of HIV or Hep B or C).
Even now Medicare offers me IVIG but NOT IV antibiotics. Ironic?
-------------------- Neil Posts: 697 | From Tucson, AZ USA | Registered: Apr 2002
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