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» LymeNet Flash » Questions and Discussion » Medical Questions » anyone had gammglobulin infusions?

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Author Topic: anyone had gammglobulin infusions?
SuZ-Q
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It looks like we're going to have to have some gammaglobulin infusions for our daughter and I was wondering if anyone had any experience with it. Don't really know what to expect.

Are there side effects? Does it take a long time? It is a multiple treatment sort of thing? Her IgGs and IgAs were low and we're waiting for subclasses to come back from the lab before a final decision. I know we'll learn more about it then, but like most moms, I am anxious and curious as to what to expect. If you have had this treatment, would you mind sharing your experiences with me? Thanks so much!!!


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Neil M Martin
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SuZ-Q:

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

[This message has been edited by Neil M Martin (edited 10 August 2004).]


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SuZ-Q
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Neil,
Thanks so much for sharing your experience.
Were you on oral abx with the IG before you started the IV abx? She's been or orals for about 7-8 mos. and we've seen a whole lot of improvement, but the concern seems to be coming from the lab results(as well as some lingering fever).

It sounds like you have really had a tough time with this nasty Lyme bacteria. I will hold good thoughts for you and hope you are now doing better. Are you still on IV abx and how long were you on them before you saw noticable improvement? Best of luck to you and thanks again!!


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Mathias
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How does a doctor know if IVIG will be of a benefit to a patient? What tests are ordered to determine it?
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oxygenbabe
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My holistic doc has many HIV patients who get IVIG every week--and they never get the typical HIV secondary infections and have no side effects (of course they are also on other medications typical for HIV). The infusion needs to be very slow, that's the main thing, to avoid a headache etc. Also monitor liver function as occasionally liver enzymes can get elevated though this is not that common.

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.

[This message has been edited by oxygenbabe (edited 11 August 2004).]


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dsiebenh
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I was on IVIG weekly for over a year. This was when I had an "MS" disgnosis, not Lyme. At the outset I thought it made me feel better. It was hard to tell though, since I was also doing Avonex at the same time for MS and that made me feel like crap.

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.

Very expensive for the insurance co., but they paid for it. They wouldn't pay $25 for IM Magnesium, but $thousands for IVIG, no problem.


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SuZ-Q
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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.

The possibility of a virus concerns me. I'll have to discuss that aspect with out LLMD. Thanks to all for your replies!


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Samantha
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Hi Suz-Q,

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.

Samantha


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Neil M Martin
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SuZ-Q

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

[This message has been edited by Neil M Martin (edited 12 August 2004).]


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oxygenbabe
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Neil, I recall this not as a study but as a letter maybe to the Lancet or one of those journals. A man who had lyme was given IV rocephin, improved then relapsed. They then gave him rocephin plus IVIG and he got well and stayed well. My recollection is this was in Europe.

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

You can get IM gamma globulin to give yourself shots at home, it is much less strong than IVIG apparently and also not as carefully "cleaned" a product...but some people with CFS say they find it beneficial.


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SuZ-Q
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Thanks to all for your helpful replies!!
We are still waiting for lab results that will determine whether or not to go this route to come back from Mayo, but you all have given me a lot to think about in the meantime. Thanks again!!
Suzy

Posts: 260 | From Virginia | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
   

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