Is anyone taking IV Ig?

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Keeping the Faith
Regular Member


Date Joined Nov 2008
Total Posts : 77
   Posted 5/3/2009 11:58 PM (GMT -6)   
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.
 
 

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 5/4/2009 12:35 AM (GMT -6)   
Keeping The Faith,

I don't have any answers for you but I did want you to know how very sorry I am that you have to go through this. I will keep you and your daughter in my thoughts and prayers.
2003 symptoms started with very intense panic attacks and anxiety. Also had sound and smell sensitivities. Was in and out of the hospital from 2003-2005. Diagnosed with panic disorder.
2007 found an LLMD and was diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence. Muscle pain, joint pain, floaters, stiff neck, rib pain, slow thinking, brain fog, etc...
2009 went back to see LLMD. Diagnosed again with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start (starting slow and working my way up, Mepron(babesia), Ultram(muscle/joint pain), Thyro Complex 60mg(Thyroid), Probiotics ,Caproyl(intestinal candidas),Psyllium Powder(intestinal cleansing support),Bentonite Magma(absorbent aid for intestinal detoxification)
-Plus a ton of other supplements


Dan's Mother
Regular Member


Date Joined Feb 2007
Total Posts : 189
   Posted 5/4/2009 7:03 AM (GMT -6)   

Hi Keeping the Faith,

My son has been on a form of IVIG for just about a month.  Instead of getting it via IV, we give it to him sub-cutaneously.  It's called Viva Globin and we infuse it once a week at home. 

Dan has "isolated IgG deficiency".  At the urging of our LLMD we went to mainstream immunologists at Long Island Jewish Hospital.  They "don't believe in chronic Lyme", but they saw a sick young man and were willing to try to help him. We have been told that the effects are cumulative and it may take a while to see results, but, both my husband and I believe that we have seen small improvements:  the way he carries himself, he doesn't shuffle when he walks any more, a slight lessening in fatigue. His seizures are not quite as long or as severe.. 

 
The above link is an article about the use of IVIG for Lyme neuropathy.  The doctor involved is the LLMD that we have been seeing.  He is someone I would highly recommend, even if only for a one time consult.  He was able to find things on Dan's "normal" MRIs that othere neurologists missed.  If you would like contact info for him, please email me.
 
I hope your daughter is able to find relief soon.  I know how hard it is to watch your child suffer.  Both you and your daughter will be in my prayers from now on.
 
Take Care,
Karen
 
 

Keeping the Faith
Regular Member


Date Joined Nov 2008
Total Posts : 77
   Posted 5/4/2009 8:38 AM (GMT -6)   
Hi Karen,

Thank you so much for your response. Ironically, that is the doctor we are seeing, too. We didn't have a very good appointment yesterday when we saw him. He upset my daughter very much by telling her that if she is not responding to the rocephin then there is nothing else he can do for her. Now we know that there are other things to be done here. I can't believe he would drop a beautiful 16 year old girl with a promising future like this. There HAS to be more to be done.

She had IV Ig when she had ITP when she was four. She was bleeding to death and this transfusion saved her life and she responded well to it. I read up on this treatment at 1:00 a.m. today and noticed that it is also used for auto-immune disorders, which she is prone to because her blood testing reported she has HLADR4. I would think he should at least try it, but he said she would need to have neuropathy to be put on it.

Maybe he was just "scaring" her into trying harder, but to be quite honest, I don't know how much harder she can try. She is exhausted at the end of each day, has tutoring all week for 2 1/2 hours a day, goes straight to physical therapy and water therapy four days a week, and then there are days that we have to go to his office because her IV failed and needs a new one. It is quite exhausting. Something is being missed here. I really hope he tries this with her.

He did say that she has good reflexes, no atrophy which is a blessing, and she can wiggle some of her toes slightly. These are positive things, but he needs to see more. I thought patients stayed on rocephin for long periods of time before they saw improvement. I'm not quite understanding this at all.

I really like this doctor. He is not the only one we see either, but he is the neuro dr. Maybe he was just having a bad day, but it felt like I got punched in the stomach when he gave us that news. We're always staying positive, nothing will beat us down, we're in it to win it, and we will.

Thanks again,

Lisa

Dan's Mother
Regular Member


Date Joined Feb 2007
Total Posts : 189
   Posted 5/4/2009 9:23 AM (GMT -6)   

Hi Lisa,

I'm so sorry you had such a bad experience with Dr. K.  When we first started seeing him, we were warned that he is not really knowledgeable about Lyme, but he has helped Dan.  He is a bit eccentric. 

If your daughter has autoimmune problems, are you currenly seeing an immunologist? 

Karen

Keeping the Faith
Regular Member


Date Joined Nov 2008
Total Posts : 77
   Posted 5/4/2009 9:27 AM (GMT -6)   
We have seen a hematologist because of her other blood disorders. I never really understood the HLADR4 issue and can't get anyone to explain it to me in a way that I understand it. Too many other things going on in my head at the same time I guess. There's a lot with her case.

I find Dr. K to be knowledgable about lyme, but not as much as her first dr., Dr. J. He is really nice to us when my husband comes to the appointments. My daughter didn't want anyone else coming this time, so it was a perfect opportunity for his behavior to unleash -- so to speak.

Mpj
New Member


Date Joined Jul 2009
Total Posts : 7
   Posted 7/10/2009 12:50 AM (GMT -6)   
HELLO!!
I think you could benefit a lot from a blog of a Doctor in Maryland
who seems to be very knowledgeable and have lots of experience with
tick borne disease illnesses; the link to his blog is:
http://lymemd.blogspot.com/
Read and read as much as you can!
I have read there that many patients develop strange responses to
Mepron so this Doctor changes it to Malarone obtaining much better recoveries!

In my understanding - as a Lyme sufferer my self also with Babesia,
Lyme is a bacteria but Babesia are parasites similar to malaria,
so the approach for a treatment has to be prolonged and stronger.
Of course the IV antibiotic is a plus when needed and I have never heard that
when Rocephin doesn't work the battle is lost; forget it, never believe it! This
Doctor doesn't know what he is saying, not only not medically true but killing
the hope is the worst anyone can do!!

What I can say from my experience is that the "Zytro" doesn't do me any good;
sorry, she is nice, can be combined with other antibiotics but doesn't work at all!
I have been using UNASYN, a medicine combination of Amoxacilin and Sulbactam
and it helps me a lot; and continue combining with plaquenil and or Bactrim... getting
rid of the Zytro and adding the Unasyn was a super plus; changed my days and nights.

Every case is different and should be especially considered; but please,
if the Doctor is a Jerk, change it!! Your beloved daughter has the right to
RECOVER AND BE PROPERLY TREATED!!!! That Dr J, who "knows more",
isn't that a better option to your needed girl? (Dr. J is for his last name?
maybe he is the same one that writes the blog, ha!).

I am also making a blog, as a voice that raises to fight a big battle,
alone maybe? I don't care; I just hope I can help someone else!
The link is: http://lymetherollercoaster.blogspot.com/

And there are tons of videos in youtube, just write Lyme and watch them,
especially your daughter should do it, to learn and start her own fight!
Tell her, we are together in this and everything will be fine!!!

Hope better days and nights for all!
GOD BLESS!
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