cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
Hi, friends.
Did IVIg help you to get over Lyme and co's? If so/not, how long did you do it?
After nine years of Lyme treatment, I still have many disabling symptoms. Twelve weeks ago I started IVIg (I have Primary Immune Defciency) and I do feel slightly stronger physically and have slightly more stamina.
But so far, the Ig has been of little help with my mental fatigue, fevers, or cognitive issues.
Can you tell me if IVIg helped you overcome Lyme?
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posted
Oh oops... sorry, you are on this thread!! Lymebrain!!
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi Cottonbrain:
Our daughter did 20 months of IVIG (2 days hooked up to the IV for 8 hours at a fusion center every 4 to 5 weeks). We believe it helped with tic's, OCD, and a few non lyme medical issues.
While Bartonella improved we don't think she is over it yet. Lyme and Babs still there.
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
The purpose of IVIG is to help replace your missing / very low IgG antibodies since you said that you have a Primary Immune Deficiency.
It does not work to replace other missing antibodies or help with any other portions of the immune system that are malfunctioning.
For people with primary immune deficiencies (I have CVID, low + malfunctioning NK cells, on and on...) is that the treatments with IVIG will prevent the frequency of life threatening infections.
Without IVIG, if you got an infection, it would be nearly impossible to fight it on your own even with the help of powerful IV antibiotics. The IVIG (along with your powerful antibiotics...) helps your body to actually have a fighting chance!
For us, simple infections are actually complicated and often life threatening. When others can watch and wait to see if symptoms pass, we cannot. We need to start treatment as early as possible. We often need higher doses and much longer treatments to get rid of the infections.
Unfortunately, there is much misunderstanding on this board about what IVIG can and cannot do.
IVIG is NOT to be thought of as a treatment for the Lyme infection. It is NOT like an antibiotic. It does NOT kill Lyme.
After you have been on IVIG for a few months, you will begin to notice the difference, how it has made you gradually feel better.
For me, I stopped getting constant infections that were making me bed bound when compounded with Lyme and Co's. The other major differences that I noticed were that I had less fatigue and less fluey feeling.
If by chance you have to miss your IVIG for a significant amount of time (for me, all it took was a week) then your symptoms and frequent infections will come raging back!!!
The dose of IVIG for Primary Immune Deficiency and Neurological disorders are different. The Neuro dose is generally much higher than the starting dose for those with PI.
With PI, the dose and frequency can be increased until you find the right ones. Example: I need double the recommended dose for my weight. Also, I need the infusions every other week rather every 4 weeks.
Generally, it takes 3 months for IVIG levels to stabilize in the body with consistent treatments. If you are not noticing any positive changes at this time, ask your doc to check your IG trough level. If the trough is low, they will likely raise your dose a bit and recheck to make sure that the level is right 3months later.
Sorry cottonbrain, this got to be much longer than I intended. I hope though that it helps you to understand better what to expect from your IVIG treatments. Your IVIG supports the body to help it better able to fight Lyme with your powerful antibiotics!
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Thank you, sammy, for chiming in here.
I would also add that many of us with Lyme, etc. have Small Fiber Peripheral Neuropathy without knowing it. If a neurologist does a punch skin biopsy to test for it, it may show markedly fewer nerve
fibers, showing that we have this. If so, you may qualify for IVIG a the higher dose, and often higher frequency, in the protocol for this to repair the nervous system damage and prevent further
nervous system damage. It's not a magic bullet, and it takes time. You need treatment for the infections, etc., too, of course. But it can help. It is a long-term treatment, as it is for late-stage
Lyme & co. There is no quick fix for any of this, sadly (unless someone just got bitten and got right on the right abx). Sadly, that is not most of us. Someday it should be.
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
Thanks to Foxy, T9im, Sammy, and Rumigirl! It's good to hear how long it took you to notice a change.
T9, very interesting that it helped with tics -- so glad it helped! I have not noticed a difference in my peripheral neuropathy after 12-13 weeks.
I noticed that Dr J the pediatrician stated that IVIG helped his refractory lyme patients to beat the lyme infections:
'Janet: Do you have some patients who don’t get better?
Dr. J: Very few. Some have refractory Lyme disease, you see this with older teenagers who are better on antibiotics, but the spirochete can never be eradicated. Once you define and delimit every single organism that’s involved, one can treat with antibiotics, but that might not reverse the process. If the antibiotics aren't curative, then one can add IV immunoglobulin (IVIG), and this can result in a cure.'
(I'm assuming it's ok to use his name, since the article is public on the web)
Thanks for all your input. Good luck to all.
** edited to remove LLMD's name **
[ 04-08-2016, 03:34 PM: Message edited by: sixgoofykids ]
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