cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
My doctor is recommending IVIG treatment-- I am just beginning to educate myself about it and I feel quite lost.
If you have tried IVIG, did it help? Did you do antibiotics at the same time?
Did it help you overcome Lyme and co's?
I have been ill for 22 years and have taken barrels of oral antibiotics. Help, I know so little about IVIG and it seems so complicated-- any info will help.
thanks, Cotton
Posts: 1173 | From USA | Registered: Nov 2007
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posted
Is your immune system clearly "shot?" It's showing low on the tests?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96238 | From Texas | Registered: Feb 2001
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Our daughter has been on high does IVIG for 16 treatments. It helps but so far has not been lasting. She is on meds and her Bart rash comes back the week before her next infusion.
If your Immunoglobulin G is low they you are immune compromised and IVIG should help.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
The above table is the normal range for Immunoglobulin G so you would need to check your blood work.
As an example when we started our daughters G serum was 530 and 602 which is below the low level of 893. So our insurance carrier has approved and now it is at 1404. Still not high considering the infusion she is receiving.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
My son received IVIG treatments for his infection-induced auto-immune condition for two years (2 days per week every eight weeks). It increased his energy somewhat, but did not resolve his chronic pain, irregular sleep patterns and memory problems.
Yes, my son continued taking his meds, but would fall asleep during treatment and needed to rest (completely exhausted) afterwards, so it was a problem staying on schedule.
IVIG is not a Lyme or co-infection treatment from what I understand, but a treatment to boost the immune system for those testing low in different IgG subclasses.
Posts: 8990 | From Illinois | Registered: May 2006
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
Thank you all for your info -- this is all good to know.
Lymetoo, so far, I have not seen my Ig numbers -- my LLMD just tells me they are low. I have seen the numbers for my peneumococcal challenge -- I failed 10 of the 14 pneumonia strains.
For people who are not familiar with the vaccine challenge: first you take the baseline antibody test, in my case for 14 strains of pneumonia.
Then you get vaccinated. You wait four-six weeks and then take the test panel again to see if you produced antibodies against the vaccine strains.
Does anyone know what type of antibodies (IgG, IgA, IgM) are tested in the pneumonia IM panel? In addition to failing 10 of the 14 antibody strains, I tested below low normal for Immunoglobin M, Qn.
I think -- not sure -- that IgM is not included as part of the IVIG infusions?
Tim, it looks as if your daughter is on a high dose of the IVIG (?) I hope she continues to improve.
HopingandPraying, it is good news that your son had increased energy; sorry to hear that it did not help with other issues. Did he experience longterm benefits at all?
Posts: 1173 | From USA | Registered: Nov 2007
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posted
Increase in energy was not lasting. He now has increased fatigue.
His LLMD thinks Mycoplasma may be the "missing piece in the puzzle" and it has not yet been properly addressed, so we are in the process of working to treat it.
Nothing else as far as long-term benefits I can think of.
Posts: 8990 | From Illinois | Registered: May 2006
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Cottonbrain...
I considered IVIG, but am so glad I did mHBOT instead, considering the risks and invasiveness of IVIG.
mHBOT has anti-inflammatory, immune restorative actions, "switches on" many healing genes...and the results are cumulative if done over time.
beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
To answer your question, yes IVIG has helped-tremendously, in fact.
As you know, IVIG is not a treatment for Lyme Disease per se. Insurance coverage is granted for very specific diagnoses-such as CVID (chronic variable immune deficiency).
IVIG was the only thing that helped DD's GI pain. IVIG heals neuropathy, which often is a result of Lyme. We don't regret this treatment at all.
If your doc is recommending it, find out why and learn as much as you can.
Best of luck!
Posts: 1885 | From here | Registered: Jul 2012
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
thanks again to all who replied.
I find it very interesting that some people responded better to the IVIG than others. Just goes to show how complex our immune systems are.
Hopingandpraying, is the increased fatigue a result of the immune system now being more active? I sure hope your son sees some improvement.
Posts: 1173 | From USA | Registered: Nov 2007
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
IVIG is extremely expensive. Typically tests need to show deficiency for insurance to cover it, although it can be prescribed for other conditions.
For some people who have immune deficiencies, it is prescribed to help protect them from getting pneumonia and viruses that are going around.
Has your doctor run immune function testing? If so, I suggest getting copies of your results.
Posts: 4681 | Registered: Oct 2000
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posted
I have used IVIG for about 7 yrs. in 2013 ins wouldn't cover it...1 yrs w/o and could tell a difference. Husband went to his HR and got it covered again!
50g every 3 Wks. Helps but nit the end all, be all Get it covered under the MS dx.
Posts: 315 | From USA | Registered: May 2005
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