posted
I have been hearing and reading more and more about IVIG for chronic Lyme. Can you please send the name or names of doctors in the northern NJ area that use this treatment. Thank you for your assistance.
Posts: 33 | From New Jersey | Registered: Sep 2009
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
mich, IVIG is prescribed for immune deficiencies. Do you have one? It is is a good idea to be tested, because some people who have Lyme are immune deficient.
IVIG is extremely expensive so insurance companies will not usually cover it unless labs justify a deficiency. There are also risks which must be considered.
Posts: 4681 | Registered: Oct 2000
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posted
While I don't have names of doctors for you, I will say that I am undergoing IVIG for what my neurologists believe is an autoimmune condition causing autonomic failure (HR/BP regulation problems, digestion problems, convulsions that look like seizures, collapsing, chronic fatigue, etc.). My neurologists are not Lyme literate (I just found out that I have Lyme and have probably had it for 30 years when I look back). But IVIG could work for autoimmune issues like I mentioned that are brought about by Lyme Disease.
From what I've researched, we get sick from the illnesses Lyme Disease trigger or make us weaker to fight against- it's not the Lyme itself.
And to clarify- doctors know that IVIG can help support the immune system in fighting infections, but it can also help autoimmune disorders. There are different formulations of IVIG to do different things.
Posts: 3 | From Seattle, WA | Registered: Aug 2018
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Hi mich
Before you attempt to find a LLMD that will prescripe IVIG for boo-coo bucks, try going through mainstream doctors to get it covered by insurance.
Make an appointment with an Allergist/Immunologist. Get your IGG levels check. IGG 1 - 4. If levels are low, you will be diagnosised with Common Variable Immune Disorder. This is an insurance covered condition for IVIG treatments. Read my journey here ;
posted
I definitely echo what Seattle Lymenmore wrote. I too have severe chronic Lyme that left my immune system done to zero and I now have a serious autoimmune disease that attacks & kills my own muscles and nerves.
So much so, that I have atrophy of my vocal cords that I can barely speak or swallow and all the small fiber nerves of my feet and calves are now dead. I can't even walk without an assistive device.
Ivig is extremely expensive even if covered by insurance. My condition was automatically approved & even with that my co-pay was still $3,500 per day of treatment!!$$$ coverage will all depend on what type of plan you have of course.
Ivig can be very helpful and curative for many but it is not without its dangers. I only was able to get the first treatment round (initial 5 day course). There's a very rare side effect of aseptic meningitis that I contracted immediately on the 6th day that almost took my life.
And since Ivig is a blood product, I also re-contracted Rocky Mountain Spotted Fever from one of the thousands of doners. Turns out, they test for typical AIDS, HIV, hepatitis, malaria and even Babesia since it attacks like malaria, but they do not test for no other tick borne infections like Lyme, RMSF, Ehrichlia etc. so 7 months after moderately recovering from the meningitis (still not fully to do this day) had to get treated for the Rocky Mountain Spotted Fever.
So do your full research to see if you truly need Ivig before just jumping in with any Dr that will offer it. It's not a standard Lyme treatment option. Definitely a last treatment option for those with severe autoimmune neurological disease caused by thier Lyme disease. I would definitely recommend only getting it done through either a neurologist or immunologist that are fully aware of the potential risks and side effects.
I hope my experience can help you 👍🏼🎀
Posts: 157 | From Colorado | Registered: Aug 2010
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