Can these symptoms go away after IVIG or PEX treatment?

[Rachel]

I am asking this question because I am wondering how helpful IVIG or PEX could be? I'm also curious what types of symptoms that your child was experiencing before doing either one of these treatments.

 

My son has memory issues, brain fog, vocal tics, daily headache, scalp pain, tremors, unable to stand. walk, or exercise due to tremors. I want to know if these symptoms can be caused by the brain antibodies that show up highly likely on the Cunningham Panel or could the Mycoplasma P be causing these or is it a combination of everything?

 

I also want to know if either of these treatments can be done while your child is on an antibiotic because of a bacteral infection. I know some have had some success with these treatments and that it may take several treatments before results are seen. Just need to hear your good or bad experiences.

[LNN]

Yes, you can do PEX and IVIG while on abx.

 

But I personally don't think PEX should be done while you know you have an active infection. PEX is a "clean up" treatment. You spend 3-5 days in dialysis, cleaning the blood of antibodies and auto-antibodies. But if you still have an active infection, the body will just keep on producing more auto-antibodies. So your clean up will be for naught, or bring only short term relief.

 

IVIG can help fight a current infection by assisting the body with a boost of antibodies from donors. It's also speculated that IVIG "dilutes" your own auto-antibodies. So it can be beneficial not just to those with Pandas but with other infections as well. But...it can also produce a big herx and the aftermath can be brutal (my personal experience). While it's only 1/3 the cost of PEX, doing multiple treatments makes it even more expensive than PEX. It is not risk free. There is the chance you can introduce a new issue from a human blood product. So educate yourself on the pros and cons and don't just take someone else's word for it.

 

We did both treatments. PEX was initially helpful but didn't last. IVIG was a horrible experience for us - tons of fallout but...the one silver lining is that it turned my son's lyme tests positive (his own body wasn't producing enough antibodies), so it did allow us to finally get on the right treatment path. Others have very positive results from IVIG. There doesn't seem to be a way to predict how your own child would respond ahead of time.

 

But the $8-10K for IVIG buys a lot of abx and many people can achieve recovery without resorting to either PEX or IVIG. So it's a very individual decision. There's no "right" decision.

 

Some of the symptoms you describe can be from either Pandas or lyme or myco. Some - like brain fog, headache, scalp pain - seem more like lyme (have you done Igenex to test?). The tremors could be chorea - you can Youtube videos to compare. Chorea can affect walking, standing, etc. They could be from Pans. Or they could be from a nutritional deficiency. B6, choline and other nutrients play important roles in nerve health and how the nerves send signals. My DD had tremors and tachycardia from zyrtec and/or cold meds given while she had a choline deficiency. The OTC meds are anti-cholinergic, so these combined with a deficiency was enough to create serious tremors and movement issues.

 

Finding the answer to your questions is like looking at a bunch of overlapping circles in a Venn diagram. There's no single cause for any of these symptoms. So finding your particular triggers is a big detective mystery. In many cases, you end up finding more than one factor that contributes. In my house, we've dealt with chronic lyme, pyroluria (a big source of brain fog for my DS), mold (a big source of tics and brain fog), strep, choline deficiency in DD, methylation issues, and yeast. What got us to wellness was peeling things away and addressing multiple issues. In hindsight, PEX and IVIG were probably the least effective - and most expensive - treatments we used. T&A, long-term abx, and nutritional supplements* were the most helpful. (*nutritional supplements that addressed very specific issues for each kid based on labs/23andMe, not a "throw everything at it" approach).

[searching_for_help]

Yeah, it's a major puzzle. Might want to look into an H. Pylori test as well. Our dd has it with no usual stomach symptoms. It can cause brain fog and a host of other problems, due to it causing nutritional deficiencies. I posted a while back about a teen boy who developed all kinds of neuropsych problems and physical things that went away after being treated for H. pylori and also B12 injections for the deficiency it caused. That being said, our dd is being treated for h. pylori and we aren't seeing any improvement YET, but her symptoms are more OCD, etc.

 

And don't forget about the rest of the gut. Yeast overgrowth or bacterial infections there cause nutritional deficiencies as well. That can affect us both mentally and physically. Do you have a doc willing to do some testing? Might be cheaper than going the PEX, IVIG route. They work great for some people, but the $15,000 IVIG did nothing for our dd, although her symptoms are different. I'd look into stomach, gut, nutritional deficiencies and Lyme.

 

Curious about the scalp pain. Others have mentioned that. Seems like Lyme usually gets brought up.

[Rachel]

Thank you so much for your responses. I may not have all the pieces to my son's illness. I have been looking back over all of his testing. If I wanted to do the Lyme testing through Ignex, .is there a certain test that can point to Lyme directly? My son has had this testing done through a spinal tap but I don't think it was done through this lab. It was negative. I just don't want to waste money doing testing that has already been done, but it still bothers me that this might be part of his problem. It there any certain test that would be specific about a tick problem?

 

For 3 months, my son's headache and scalp pain were practically gone. Even his tremors were less and he was able to stand, walk and do physical therapy. He had made so much progress that his doctor and I thought he was on his way to recovery.This happened when my son was on a high protien shake with amino acids. When my son got a double whammy of flu, all these symptoms came back and he was still on this high protein amino acid shake. I think the flu missed up methylation pathways because I have never been able to get him back to his baseline before having the flu. I am waiting on the results of his 23 and Me testing.

 

My son has been on the Choline for two weeks and tremors are still the same. I keep thinking that he may not be shaking as much as he was but it's really hard to tell. If his methylation pathways are missed up this may be the reason I cannot get him back to baseline. However, I still have to deal with these brain antibodies and Mycoplasma P. and? maybe Lyme? I just want a simple solution to this mess but I'm so glad I'm not the only one with a sick child. I wish I would have found this forum sooner but his brain antibodies were not discover until this last year. When this showed up, the cardiologist and I realized my son had more than just POTS.

 

My son is still in the PANDAS study and the antibodies that affect the heart have also been found. My son is also in the POTS study at OU because they have found some specific receptors that have been found in POTS patients. Don't know how long it will be before I know if these are also present. Just wanted to bring you up to date on some other testing. The results of this other testing should be interesting.

[Brese]

Before IVIG, separation anxiety, contamination issues, fear of chemicals, obsessive thoughts, urination frequency, rages, baby like behavior, sleeplessness, refusal to eat, difficulty walking, facial grimacing, poor handwriting, excessive energy, fear of bugs, electricity, showers, and more. After IVIG she was sick for two days with headache and vomiting. Four weeks out spike in behavior problems, 3 months out was eating, taking showers, wearing same clothes, 6 most symptoms gone except fear of poison. By one year out all symptoms gone. I would spend the money again for the IVIG it was worth every penny it gave me my child back.

[Rachel]

Brese

 

That is great news and very encouraging. I know my son has a long ways to go with the healing. I will keep the IVIG treatment on my list. I know there is many pros and cons about this treatment.