posted
There is a possibility that my daughter may be allowed to start IV Ig and I was wondering if anyone here is on this treatment.
The dr. told us that she would have to have signs of neuropathy to be put on this. She is going to have an EMG test done very soon as well as a nerve biopsy and I guess the dr. will make a decision based on those results.
She is unable to walk due to lyme, and officially stopped walking completely in January of this year.
She has been on IV Rocephin for six complete weeks with no improvement. He said he only allows three months with no improvement, so we are reaching the end of this treatment course.
He also added Doryx 2x/day to see if there is any change. She is very sensitive to oral meds, however, she agreed to try the Doryx again.
Prior to this treatment she was on oral meds but could not tolerate them. She was treated for babesia and bartonella, and has tested negative for both of them now.
After researching IV Ig, I realized that she was on this when she was four years old when she was hospitalized for ITP. This helped her stop the excessive bleeding and got her better.
She is predisposed to autoimmune issues, and in my reading it indicated that people that have autoimmune problems take IV Ig, so I thought she would be able to go on it based on that alone.
Has anyone had any luck with this treatment? Would you be able to tell me why it was prescribed for you (what were your symptoms)? Thank you very much.
Posts: 51 | From Connecticut | Registered: Sep 2008
| IP: Logged |
posted
I did IVIG for 6 months. The doctor used EMG testing which indicated neuropathy to get it approved by the insurance co. I also had all of my IG levels checked with all sub classes. My sub class three came back below normal. I do not understand why doctors do not test your IG levels. I am the one that had to request this test. I did not show any improvements with the IVIG.
My worse symptom is the ability to walk. I have been on some type of treatment for a year and the walking is getting worse.
Posts: 15 | From El Paso, Texas | Registered: Jul 2008
| IP: Logged |
posted
Thanks Outlaw for your response. I'm sorry that your walking is getting worse. My daughter's walking went from ugly walking to not being able to walk at all. At this point anything is worth a shot.
Do you have anything else along with the lyme? She had ehrlichiosis, and is being told that her babesia and bartonella is now negative. Well something is keeping her from walking because she walked fine before the lyme and friends came along.
Posts: 51 | From Connecticut | Registered: Sep 2008
| IP: Logged |
My daughter is also unable to walk...We tried IVIG for about 1 year (Nerve conduction and EMG testing showed severe CIDP)...However, improvement was not seen, unfortunately. My daughter also has an immune deficiency disorder.
I'm guessing you're seeing Dr. K or Dr. Y?
I know that it has been beneficial for many Lyme patients, so it is definitely worth a shot if nothing else has helped your daughter thus far.
I hope that yours will be a success story!
Posts: 371 | From CT | Registered: Jun 2008
| IP: Logged |
posted
I did not have any positive results but Dr. indicated that I had Bart and Babs. based on symptoms.
I agree with you, I was walking before this and hope to be walking again soon. I did have some improvements during the year but always seem to decline after the improvement's.
I also think that since my body is so rigid it is causing the walking to get worse.
Posts: 15 | From El Paso, Texas | Registered: Jul 2008
| IP: Logged |
posted
My husband has improved with IVIG. He has myositis (and neuropathy) so he falls in the autoimmune category. The majority of myositis or at least dermatomyositis patients respond well to IVIG.
Posts: 984 | From San Diego | Registered: Nov 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic