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Hi,

 

Need some advice....freaking out abit.

 

Had appt. yesterday with neurologist at NYU....told him everything about my DS 23.

 

Been treating lyme for 4 years and babesia for the last 2 as well. All other coinfections negative. Basically my son is mentally disabled, doesn't speak except for 1 word answers but the answers don't coincide with the questions. Very confused, just sits in chair.

 

He has taken MANY abx and herbals, nothings worked. Always declined. Current test come back negative from igenix for babesia and bartonella. Negative lyme (all bands non reactive) thru Quest.

 

Doc from NYU said brain spec from 2010 was bad, memory areas showing no activity.

He says my sons immune system is working over time....producing antibodies to the infections but doesn't think he really has these infections anymore so doing the IVIG will surpress and help calm down his overactive immune system.

 

currently seeing LLMD and will of course see what he thinks about all this before we do anything, also going to see immunologist.

 

So NYU doc wants to have another brain spec done, then put DS in hospital for 5 days where he'll get another EEG of brain and spinal tap done as well as do IVIG for 5 days.

 

Then he'll come home and if all went well with the IVIG in hospital, then he'll schedule IVIG for once every 2 weeks at home anywhere from 3 months for up to a year.

 

In reading old post I thought people only did 1 IVIG then not another one for many months later?

 

I don't know what to do....can this set him back? As bad as he is we are very thankful he's as good as he is.

 

Should we just continue as we are? Basically just trying one thing after another, praying something will work?

 

Should we take this chance?

 

Please, any and all opinions are welcomed.

 

Terry

 

 

 

 

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If a neuro is willing to weigh in to such an extent, I think his advice is worth serious consideration. Doctors these days are not too inclined to offer up IVIG unless they think that is has some valuable potentials to offer. My son had IVIG and we experienced great results in the immediate and moving forward.

 

Best of luck

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If an nyu neuro doc is so invested in this with testing and intensive tx. I would do it.

My 15 yo daughter does monthly ivig now (with monthly steroid iv also) and she has improved by leaps and bounds. She is also on cellcept since monthly infusions started.

I say go for it!

We have seen some flaring post infusion. Each flare has been shorter in duration and severity.

Sounds like a dream to me frankly.

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At the most recent ILADS conference Dr. Katz from CT spoke about how helpful IVIG can be for those suffering from Chronic Lyme et al. You might consider consulting via phone or purchasing his talk from ILADS. I know he also does spinal taps looking for specific markers prior to IVIG but I can't remember what they are (not infection).

 

Prior to treatment, I would also talk with your LLMD about doing mycotoxin urine test for mold and test your son's Nagalase. Elevated Nagalase can cause immune dysfunction and mold toxins are a huge stumbling block when treating chronic Lyme. With mold it is important to test the individual not just environment because the exposure could be coming from anywhere: home, school, work environment, etc.

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I second what PowPow said. We have done 5 HD IVIGS total, but 3 (almost monthly) since plasmapheresis in August (that would = 10 days). We are finally seeing some good results from either the IVIGs the oral steroids (or a little of both).

 

In fact today we did our first dose of IV steroids (out of 4 over two days). I'm a believer that suppressing the immune system is the way to go. DS tested positive for so many infections that it became obvious that his immune system is really broken.

 

Btw, we hadn't seen anything this positive since starting treatment a year ago.

 

Good luck,

 

T.Anna

DS15

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as far as I know, there are 2 types of IVIG, HD and the other one. THe other one is given in smaller doses and more frequently. You an ask your dr this question, will this be HD and if not why not? what's the advantage of the approach he is proposing over HD? etc.

If I were in your situation, I would definitly do it. The risk here is the risk that comes with IVIG -- you should read about it.

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If its a neurologist - it's most likely HD. They consider the HD a "neuro" dose vs. low dose as a "immune" dose. That's why som many immunologists aren't comfortable with HD initially, they are used to only doing the LD. But since PANDAS is really a immune/neuro combo...

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Hi,

 

thank you all for your input....I didn't know there was 2 forms of IVIG.

 

I'm just worried this could set him back, if so, can we get him back to where he is now?

 

Also, If you do still have an infection, how bad is it to do IVIG?

 

As of right now, the test are only showing negative or past infection but can you really be sure NOTHING is going on?

 

I will say, we are leaning towards having it done but only because we've been treating for 4+ years and nothing is working. Also as long as my insurance says yes.

 

I'm going to write down all my questions and call for a follow-up before he's scheduled.

 

thank you all

Terry

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We did IVIG while DS probably still had active infections (back in February 2013) and we still had some improvement. I think that your risk of a setback is relatively small. If there is a regression you will have someone willing to take reponsibility and who will effort to find the reason.

 

May I ask who the doctor is?

 

T.Anna

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He recommended the same thing for me but with different diagnoses. So I'm a bit confused. Is this something they just do for every patient? Sorry to be cynical but I've run into some shady doctors in the 11 years, though I must say that I highly respect Dr. Chong and I trust him, I really do. He called me just the other night and talked to my mother and I for a bit, he seems like he really really wants to help.

 

They are kind of against infections though b/c they made a point to tell me they were not giving me minocycline for an infection but for inflammation.

 

My PET scan was extremely abnormal and troubling, so much so that the radiologist called Dr. C personally and wanted to know everything about my history. "Extensive" and "severe" - many areas of decreased metabolism in my brain. With that, and many other things they look at, labs I brought with me, MRI, was diagnosed with "clinical encephalitis" and primary autoimmunity though they don't know what is triggering the autoimmunity, they said they'll find out with spinal tap and he even mentioned neuro lyme.............

 

We were going to do ivig here in florida but I had MAJOR reactions to 1/4 of 50mg of minocycline. MAJOR problems. He could not believe my sensitivity to medication and that's why he said he wants me to do ivig in nyc - basically to be monitored b/c "some people don't react well". Within 2 weeks of taking this tiny dose of minocycline, I had a UTI, yeast infection, and c-diff; I was taking 3 different probiotics heavily as well.

 

I've always thought it was auto-immune and I always knew it involved my brain. He is troubled by the PET scan and my fatigue. He said it's some of the worst fatigue he's ever seen in a patient and that's why I haven't been on here lately or even left my bed much. All my fatigue is mental, extreme headaches, extreme psych problems, basically it feels like my brain is rotting and I'm almost always convinced that I'm dying.

 

Anyways, just wanted to give my experience. He said the 5 day stay would only include 2 rounds of ivig. I am very very scared. I have been sent to the hospital multiple times from tiny doses of medication. I had such a bad reaction to the PET scan injection stuff, I had to stay in the hospital that day.........I basically again felt like I was dying and I was so tired I couldn't even speak with the doctors, I was just mumbling stuff as my eyes rolled back in my head.

 

But if you guys think I should trust an NYU neurologist, I guess I have no choice. :)

 

This is all IF insurance accepts. I am so freaking scared. Only because of my med reactions. It's so so bad for me. And we're talking about ivig!!!!!!!!

 

Also my proinflammatory cytokines were sky high. But the cause of a PET scan result like that is inflammation. They believe my fatigue, everything else, auto-immune.

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FrikFrak, have you decided what to do?

 

Ophelia, this is a step in the right direction. this is essentially the same diagnosis that my daughter was given- encephalitits (though she has never had a PET scan) and a primary autoimmune disorder . Hers was finally identified, but that is not always the case. so glad to hear that you were not blown off, but understandable why you are so scared. are you just waiting on logistics, (ins, scheduling) now?

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Hi,

 

Yes, We have decided to go ahead, as long as insurance will approve, still waiting on that.

 

I'm praying it helps. If there's a chance it can help then we have to take it.

 

Not scheduled yet for over a month so I'll post and keep everyone updated.

 

thanks again for everyone's help

frikfrak

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