In 1997 I became paralyzed, apparently due to Lyme, co-infections and jaw infections.
My HMO neurologist diagnosed Guillain Barre Syndrome and ordered GBS therapy. He didn't consider Lyme, and in 1999 when I told him I had a LD diagnosis, he ridiculed me and told me to see a psychiatrist.

In June 1997 he ordered 11 plasmapheresis sessions and in July 1997 he ordered 3 IV catabolic steroid doses and in August 1997 when I was bedridden and too weak to use a bed pain he ordered IVIG.

From 9/97 through 5/99 I had 11 IG's, 1 gram per kilo body weight. Which was ~ 90 g IG per dose. My hmo paid 100% at (I'm told) $200 a gram.

After IG I experienced immediate benefit, with slow energy and strength gains for up to three months. No negative side effects, although I did feel a bit queazy, and the illness made me feel like death warmed over.

But despite their temporary/partial strength benfits, they could not keep me from full blown relapses.

Once I began IV antibiotics (paying out of pocket) my HMO didn't need to offer me IG.
I came close at times, and had I strayed from IV and oral antibiotics, I could have gone back on IG. But IV antibiotics worked so much better, I didn't want to go back on IVIg.

Ironically, the HMO paid BTM (big time $) for IV IG but not for IV antibiotics.

Then a Univ of Pitt study posted here told of a man whose Lyme was allegedly cured by 5 days on IVIG. I emailed the article's author but got no reply. (Does anyone know what ILADS says about IG?)

So I don't know if IG + antibiotics is better than IG alone, or if "enough" IG will send a Lymite "over the top".

IG boosts the immune system, which might help root out and kill the bugs. The dose I received kept me from being put on a vent machine, but was not sufficient to cure me.

OMT (one more thing): IG is a human blood product so there is a slight possibility of blood borne viruses such as Hep B, C or HIV. Is not to be taken lightly. But I don't know of a single instance where anyone traced a virus to an IG infusion. It seems a small window of opportunity for a nasty virus.

Then again, maybe the bad viruses and the bad tick borne bugs would duke it out, and kill off each other.

A pharmacy here offers oral IG, which I took for a while, and which offered a lessor but noticable strength gain. But those pills were AWFULLY expensive, and their benefit was short lived.

Please keep us posted.

Neil

There was one case history in a journal, I forget which, where rocephin alone didn't cure lyme but IVIG plus rocephin did. If she has testable deficiencies this might really help.

Getting unknown viruses is a concern although the last such incidents were in 1994 with one manufacturer, and hepC virus. Now they are more careful about IVIG and trying to purify it for unknown viruses too. There's no guarantee but the risk is quite low.

Then before a vacation I had 2 doses of IVIG in one week and felt worse. I did not resume IVIG or Avonex after the vacation and did not feel I went downhill without it.

She had had bloodtests checking for levels of IgG and IgA which were both low. Additional tests for subclasses of the above are in the works now.

I don't think this is in any way meant to be a cure for Lyme, just an adjunct to her treatment. During the school year she stays sick the whole time and catches anything that comes within 20 feet of her and she has be running a non-stop fever since last September. It's just meant to give her overworked immune system a boost.

Please keep us posted on your daughter. I undersatnd completely as my daughter is in the same position as your daughter. We start IV IG next Monday.

I took a Biaxin 2/99 for an IGeneX test, and perhaps a dab of DOXY but not enough to dent my then-four-years-old Lyme.

I was not on oral or IV abx when I took IG 1997-1999 due to my HMO's "don't ask, don't tell, don't treat" Lyme policy.

AFTER I began IV and oral antibiotics it took about a week or two before I felt a positive effect. Eight weeks on Rocephin in 1999 restored my strength so that I could climb stairs three steps at a time.

Then my LL MD dumped me (maybe he read about Dr. B and OPMC and freaked) and in less then a month I was as weak as before Rocephin.

Godsend: at that time a LLND restarted me on IV antibiotics and I slowly gained strength.

Months after I went off IVs again, and again relapsed.

Where is this study about IG and abx being better than abx without IG? That would seem sensible, esp if in "early" stage.

Orals didn't do much for me until I had IVs 9/99 - 4/00 and 7/2001 - 9/2002. I have not taken IV abx since 9/02. My arm veins are badly scarred, touchy and grudgingly give blood when I receive phlebotomies for my rubra vera.

Glad to hear your daughter has improved on oral abx. It breaks my heart to think of youngsters with chronic tick borne diseases.
I had 40 good years of health before my NICO and TBD nightmare began in 1994.

Anyone who has taken IG please mention the dose and whether oral or IV. And does anyone know a less costly immune system enhancer that made a difference against Lyme?

nm

Not a study--but an interesting case history. Did not keep a copy and do not remember where it appeared.