When should Ivig be considered?

[laure]

Literally healing overnight from abx, I would say, is a big clue, as that is a very unusual experience, at least in the lyme world. Now, what it is a clue exactly of, I have no idea, but I should say that is something you should keep thinking about and as you network with others, knowledgeable practitioners (not necessarily the useless ones), you might want to point that out and keep exploring why that might have happened.

 

Regarding the parasite/worm testing, I would seriously suggest not wasting any money on any stool testing for the parasites/worms. ART would be the only thing worthwhile, I would think. Every human has parasites/worms living in us, and they are not all in the intestines that would even have a chance coming out in the stool. In most (all?) chronic lyme cases, parasites/worms are a serious issue to deal with, and so it makes more sense to assume they are there than it does to run a stool test. Now, there are many types, and perhaps ART can help gear where the worst problems are, or at least priority for the moment to treat.

 

 

I did not realize the turnaround was so unusual. She had been on zithromax for 2 months with some noticeable improvement in brain fog, etc but still pretty bad OCD, then Augmentin was added and the next day she opened her eyes and literally started pulling out toys she hadn't been able to touch in 3 months. Started taking showers again too. Over the next week everything was within the boundaries again. Those were 2 good months after that. I am surprised others haven't experienced this...

Of course now we are back to where we were, in a way, just new adaptations. I am postponing the first Ivig until the end of August, so we can see if what the ART doc gives us to go on works.

[mommakath]

Sorry sucha rough patch. We are PANDAS and LYME, both kids. Dr. J did recommend IVIG to us as well as son going downhill fast. Bartonella positive. Raging and becoming more and more depressed asking for his old brain back. IVIG was a true step in the right direction. Great 10 days afterwards, some old habits coming back in weeks 2 and onward, we are 7 weeks out and we have seena huge improvement. We go back next week for more 'brain candy' and I am taing daughter this time. I was scared and said I would never do it.....now, I'd take them more if I could. And, we would backsilde with every virus, sneeze, strep, etc. near us. So, this is my year to boost the immune system and I am even homeschooling them to help it out (another thing I said I'd never do). Best Wishes in your decision! K

[Tamistwins]

Update on dd10 after Dr. B visit Tuesday. Quick background: She is on 4 antibiotics - augmentin, zithromax, bactrim, tindamax (weekends). She is positive for lyme, and Dr. J suspects bartonella as well. Her only symptom now is pretty intense OCD. She doesn't herx at all. She had no response to quitting all abx for 3 days last week. We do detox, probiotics, the whole gamut. At this point she is scheduled to see Dr N for ART in mid-June. Hoping for a miracle. Beyond that we are considering Ivig per Dr. B and Dr. J. Her anti dNase B titers are still high (980) and ASO slightly down (190). Dr. B believes we will not see relief until the dNase B titers come down. She has been treated for lyme since December 1st. She had a brief honeymoon in Dec and Jan, then all symptoms returned gradually.

Questioning if after all of this lyme treatment, perhaps Ivig could help? Could it hurt at this point? She is suffering socially and relationally because of her OCD/regression/oppositional defiance. If there is permanent damage being done to her brain, obviously we want to stop that in its tracks. Sorry so disjointed - I believe I am suffering brain damage at this point...

Thanks for any advice.

Hi I didn't read any of the other responses but I just wanted to share our experience with you. My children also see Dr. B and Dr. J. Dr. J is treating or lyme and suspected bartonella. We were treating with azith, omnicef and in February Dr. J added rifampin and tindamax. We saw no herxing and no added benefit to taking all these meds. In May my son got very sickly looking and had terrible cough so we stopped all meds and went on cipro which treats mycoplasma and good for bartonella and probably strep too. He seemed to improve his cough and we had ivig so not sure what did it. Anyway after 10 days went back to all the previous meds which did nothing. So now after my recent appointment with Dr. J we are on a higher amount of cipro in combination with rifampin and I am definately seeing worsening of symptoms. All things that weregone are now back. I haven't yet added tindamax to the mix. I pray this worsening is the start of improvement for us. So perhaps the typical meds aren't working and you need something stronger. Cipro worked for those 10 days on getting rid of some tics my daughter had too.

 

good luck!