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» LymeNet Flash » Questions and Discussion » Medical Questions » Scared of IVIG

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Author Topic: Scared of IVIG
Monica922
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Hi
I have been on abx for 1.5 years with lovely lyme, babs, and bart. I have nonstop inflamation, jaw pain, and nerve pain all over. I saw a neurologist and he suggested I try IVIG. I have been through a living nightmare of pain and needles for the last 2.5 years. What do you know about IVIG...is it safe? They obviously do not check for lyme and babs... Has it helped anyone? Please tell me the good and bad so I can decide what to do. I am still on a ton of abx and I have improved but the pain stays. Thanks for your help.

Monica

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feelfit
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PM ArtistDi. She has had IVIG and is very helpful in sharing what she knows about this.

Feelfit

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Parisa
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My husband has been on it for a little over a year now. He was having muscle weakness/deterioration and it helped him immensely. He also had alot of pain which has reduced incredibly.

It is not an overnight fix so you will have to wait a few months to start really seeing results. I believe that the IVIG combined with IV antibiotics is what has helped turn my husband's treatment around.

If you can qualify, you should seriously look into this.

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Lymetoo
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This may have nothing to do with your pain.. but might be worth a try. Try eating gluten free for at least a month and see if the pain/inflammation gets any better. It might!

I don't know much of anything about IVIG. All I've heard has been good though.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Monica922
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Thanks..I will try it. I have tried everything else [Smile] Could gluten really cause that much pain and inflamation? Are there good sites for Gluten free? I definitely need to improve my diet. When you feel like crud you just grab what ever is easiest...this is far from what ever is healthiest. Thanks for your help.
Monica

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JKMMC09
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My daughter was on IVIG for 10 months, she had no problems with it, through it didn't improve her condition, unfortunately.

What makes you afriad of it- because it's a blood product?

I had my fears about that too, in the beginning. I was worried my daughter would contract something else, since each bag of IVIG comes from 1000-2000 donors.

I prayed about it, and everything was fine.

My daughter has had several blood transfusions as well, and tolerated them fine too.

I hope the IVIG works out for you!

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sunnymalibu
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Hi Monica,

I'm sorry that you still have so much pain. I've been getting IVIG once a month since September. I was nervous about it too and read alot about it. One thing that helps is to drink a LOT of water before the infusion. It can affect weak kidneys so it's good to keep things flushed. I usually go into the hospital in the late afternoon. They keep all of their IVIG patients for a 23 hour hold so it's an overnight stay.

After the first couple of infusions I had a hard time keeping my blood pressure under control. That czn be a side effect of the IVIG because there's some wars going on in the blood. They also give me a shot of Reglan during the IVIG for nausea if nedessary.

I really like it and would recommend it, especially if your insurance will pay for it.

Good luck!

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sunnymalibu

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Monica922
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Hi Sunny
Why do you like it? What symptoms has it helped? Thanks

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Parisa
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My husband gets his IVIG at home through an infusion company. In the beginning, the nurse stayed for the whole transfusion. Now he is so used to the procedure that other then setting up the bag the nurse doesn't need to stay anymore.

The first few infusions my husband felt fluish and tired after the IVs. Now, he's just a little tired about the third day after the IV.

There are different brands of IVIG. Make sure you don't get the brand with sucrose in it. That's the brand that has been implicated in the kidney problem cases.

My husband has Lyme induced dermatomyositis and IVIG is used for dermatomyositis. This is conjecture on my part but I think if you fall more in the autoimmune realm you probably have a better chance of the IVIG working.

A good resource for gluten free is: www.celiac.com.

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sparkle7
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I had some shots with immunoglobulin. I didn't find them helpful & they were expensive.

I'm not sure if the IV is much better. How do people who do this know if it's the IVIG or something else that they are taking that is making them feel better?

I didn't like the idea that it's a blood product. Kind of made me feel like a vampire...

The lady at the clinic I went to said to drink water so they could fine a vein - in regards to the other IVs I got when I was taking the immunoglobulin shots.

They didn't say anything to me about kidneys - but I was getting other stuff through the IVs - not IVIG.

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sunnymalibu
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Hi Monica,

I think it's helped my fatigue and stamina. Have they tested your IgG Subclasses? I have low subclass IgG2 and IgG3. Each subclass is associated with some type of deficiency in the immune system. My diagnosis is hypogammaglobulinemia. Because of this diagnosis my insurance pays for the infusions.

IVIG is antibodies from other people but I don't think there's any blood in it. It's clear and looks like water.

I hope this helps!

--------------------
sunnymalibu

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Monica922
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Thanks Sunny
Yes I know I have an IgA deficiency..and same with the subclasses as you. They approved this for me based on severe peripheral neuropathy. I have horrific burning sensations in my body. I sure hope this helps a little.

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Monica922
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Question also...do you stay on all the abx while you try this? I am on a ton [Smile]

Monica

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Parisa
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My husband started IV Rocephin and then two weeks later started IVIG. He had a huge herx. We stopped the Rocephin for about three months and then added the Rocephin back in.

So, since he was only on IVIG for a time and started to improve without the antibiotic we know that the IVIG was working. Also, when Rocephin was added in he started making more progress and even more progress when malarone and Flagyl were added.

This worked well for my husband. Of course, everyone's mileage here varies.

I would recommend not starting any new antibiotics when you first start IVIG. If you've been on one for a while, you could stay on it.

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