Finette Warns About IVIG Infusions for Chronic Lyme Disease

Hi, my name is Finette, and I am not only a Lyme Patient but the parent of one. I am also a 20 year veteran in this battle as well as a trained and experienced patient educator and advocate for Lyme and tick borne illnesses.

If you do not have the serious symptoms that require IVIG ( such as neuropathy as proven by biopsy and emg), immune system deficiency as proven by a good workup by immunologist and several sophisticated blood tests or other such condition to undertake this regimen is VERY dangerous and foolhardy.

This isn’t the cure-all some think it is. It is a very specific treatment meant to target very specific problems. If you don’t have those problems taking IVIG will not do a thing for your Lyme.

Also even IF you have these problems and the IVIG helps them; you may still be left with all of your other Lyme symptoms.

This is a blood product and must be respected as such and all the care taken. FYI MMN is Multifocal Motor Neuropathy– often confused with ALS, etc it is a demyelinating peripheral neuropathy.it is most common in middle aged MEN. many things ( including other autoimmine illnesses and even some Lyme symptoms) can mimic and be misdiagnosed as this. I have seen MANY Lyme patients told they have this–and turns out they do NOT anti-GM1 antibodies in 50-80% cases and EMG studies can show myelination issues so without EMG’s and antibody tests a diagnosis of this may be negligent this site http://www.cidpusa.org/multifocal_motor_neuropathy.htm has a great chart at bottom showing the diagnosis of ALS vs CIDP vs MMN if you have chronic Lyme/coinfections and exhibit a few neuropathy symptoms make sure you go to a very experienced neurologist to diagnose the type and then decide if the risks of IVIG are right for you.

I have seen far too many desperate people with Lyme trying the “latest” and disappointed by the lack of response and worse–permanently harmed by it.

If you need help finding reputable sites, Drs or support groups please email me at finrussak@aol.com and BE CAREFUL of anyone telling you they have ” the cure”.

Jenna’s Note: I agree with Finette, and apologize that the comment function in WordPress did not allow her attempt to comment.

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Posted on December 8th, 2009 under Chronic Lyme Disease, Discussion, Personal stories • RSS 2.0 feed • Leave a response, or trackback

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(1 comments):
December 8th, 2009 at 10:34 am

Interesting and informative. But will you write about this one more?

Ashley

(1 comments):
January 29th, 2010 at 3:02 am

Very informative post. Please write more about it…

Thanks for sharing excellent post…

Dolores Claesson

(2 comments):
October 1st, 2010 at 4:44 pm

This was a much needed discussion. IVIG can convey Jacob Creutzfeldt disease, commonly known as Mad Cow and other prion diseases and viruses and tick borne illnesses that we do not already have. Our blood supply is not being tested for tick borne illnesses. Two Immunologists want to give my daughter IVIG and we have decided not to pursue this. My 17 yr old daughter said we should be arguing about boys, dating, curfews and not the benefits and potential problems of IVIG. I am so sorry she is not leading a normal life.

Finette Russak, M.S.PhD(abd)

(4 comments):
October 1st, 2010 at 5:30 pm

There is always a small risk that blood products may contain viruses that can cause infection.

In the past, a small number of people who received IVIG became ill with hepatitis. Today, products are now treated to prevent transmission of the virus that causes hepatitis and other viruses. There have been no documented cases of the transmission of the virus that causes AIDS (HIV) through IVIG.
Also IVIG is filtered effectively removing the viruses and larger proteins leaving the beneficial IG proteins intact. Ihavent found any reports of a single CJD being transmitted via IVIG.
The same goes for tick illnesses–the product is tested, treated and filtered–Ive not seen a single Tick Illness case from IVIG although its not totally impossible

I happen to give it to my son (21) for the past year for severe neuropathy [due to Lyme we think] and also gave it to him 3 yrs ago for immune system deficiency

We always must weight the risks and benefits of any treatment. And if the IVIG has potential benefits, IMO we cant let the tiny risks prevent us from trying to be well due to fears. The tirsk is balancing our fears with information .

One of the best reasons to give IVIG is for an immune deficiency since thats like giving blood to a severely anemic person–may be life saving!!Youre replacing what the body doesnt have.

(4 comments):
October 1st, 2010 at 5:35 pm

I have told Jenna that I would be happy to write more on this or any other topic but its far easier if I have questions that need to be answered.
Please realize that I am a disabled scientist ( developmental biologist) and not a physician. I have, as Jenna said, been a Lyme Disease advocate and patient educator for more than 2 decades now so Ive been here since almost the beginning.
I am indeed a Lyme patient having been bit during the 8th month of pregnancy with my son ( over 21 yrs ago) and he has both congenital Lyme and company as well as his own tick bites at ages 3 and 5. As of now he has/had Mycoplasma, Bartonella, Lyme, Babesia while I have all except the myco.we both MAY have the XMRV virus but havent as yet been fully evaluated.

LymeMom16

(1 comments):
October 2nd, 2010 at 5:59 am

We didn’t do the IVIG either. It didn’t make sense to want to modulate the immune response before killing the infection. IVIG scared us, there must have been risks, but none were discussed with us. How much blood was harvested to get enough human Fab fragements and where did those humans come from and where had they been? We can’t even find Lyme Disease and Co-infection pathogens reliably, there is no chance we can adequately screen blood products. We could understand IVIG as a last resort effort, but our child had not even been treated with antibiotics at the time. She has been under the care of a highly recommneded LLMD providing her more conventional treatment; her pain and symptoms have been gone for 4 weeks now. Next LLMD visit latter part of Oct. BUT our child may have recieved LLMD treatment sooner than other sick peopole. She was misdiagnosed for only 5 months as compared to “years” that others were/are subjected to.

Happiness is...Total Recovery From Chronic Lyme Disease. IVIG Part One | Jenna's Lyme Blog:
June 27th, 2011 at 11:08 am

[...] of our readers described some of the dangers of IVIG (http://www.lymediseaseresource.com/wordpress/warnings-about-ivig/), and I am finding that many people are afraid of the IVIG infusions. If you picture your immune [...]

(4 comments):
June 27th, 2011 at 2:54 pm

“Happiness is…” what is your post? I cant read it past “if you picture your immune system”

IMO people should approach IVIG infusions with EXTREME caution. respect the risks and weigh the possible vs probable benefits. then decide. Like chemo for cancer–balance what it may do vs what it CAN do and add into the mix what side effects and/or risks there are and then make what is a very personal decision; best made with your Drs.

yılmaz aytan

(2 comments):
July 1st, 2011 at 8:13 am

Dear Finette,
I am a cardiologist from Turkey, I have a 6,5 years old son with lyme,babasia, bartonella, chlamydia pn.etc, (probably congenital lyme), I do have many symptoms indicating lyme disease. I read your thoughts about IVIG and you say that
”I have seen far too many desperate people with Lyme trying the “latest” and disappointed by the lack of response and worse–permanently harmed by it.”
What do you mean by saying ”permanently harmed by it”?, are you talking about some complications other than virus or prion transmission?

best wishes

(4 comments):
July 1st, 2011 at 12:53 pm

@Yilmaz
“Permanently harmed” includes infections ( some septic) and phlebitis ending with permanently damaged veins due to the IV. It includes delays of more effective treatments and therefore progression of the possibly irreversible CNS, PNS and cardiac damages , as well as arthritic/joint damages. It includes the erroneous assumption by the treating physician that absence of improvement after IVIG, that the patient is therefore either somaticizing and/or perhaps didnt have Lyme after all.
Other than direct issues related to the treatment specifically ( i.e. the infections); these other things are possible with any delay in “effective” treatment ( for example when many are convinced some electric machine or some wave of a magic wand will treat them).

Ive also “seen” (spoken with the patient) who started with mild dysautonomia and due to the heavy protein load of the many IVIG infusions she had, totally disrupted her own blood volume balancing and never recovered after she stopped IVIG.Her dysautonomia is much worse and doesnt seem to be improving after 2 years. This reaction(I think) may be rare but since we dont know how many with Lyme have dysautonomia as a secondary insult, as a primary condition not yet recognized prior to the Lyme infection trigger, or even coincidental–its something to be aware of when making that risk vs benefit analysis.

IMO virus and prion transmission are far more rare than the other risks.

my comment about many Lyme pts trying the “latest” and experiencing permanent harm was more general, and includes those questionable treatments mentioned above,as well as things like having Bismuth infused/injected–which has caused death.And Salt/C protocol which has many with permanent kidney damage. Everything desperate folks are talked into with little if any benefit vs risk analysis.

nice to meet you! I am sorry to hear about you and your son. I hope you both can find the correct and most effective treatment for your own cases and experience wellness.
Best
Finette Russak

james p

(1 comments):
August 31st, 2011 at 8:54 pm

Finette,

It includes delays of more effective treatments and therefore progression of the possibly irreversible CNS, PNS and cardiac damages , as well as arthritic/joint damages. Please share with us the more effective treatemnts that you are speaking of? also if they exist and work so well why are you not sharing this much needed information? Have they worked for you?