Jenna’s Lyme Blog

Hi 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 • Tags: Finnette Russak, IVIG infusion for Lyme Disease, Neurologist. • RSS 2.0 feed • Leave a response, or trackback