justinekno

This comment scares the bageezus out of me. We are going through Lyme right now and contemplating IVIG to help "boost" my son's immune system to continue the fight against Lyme (and PANDAS). I've heard that the blood is really cleaned but I always have it in the back of mind, what if.

Have you tried posting on Lymenet and asking for a list to be sent to you? I did that and received a ton of info.

There's different antibiotics for neuro Lyme?

I was reading Burrascano's guidelines for Lyme and I now see that he mentions magnesium, the b's and vitamin c. No mention of zinc but since my son is deficient, we will continue for now. I don't think that is a problem to take those supplements while being treated for lyme. My llmd who is an integrative physician uses Myers Cocktail IVs for lyme patients and they contain zinc, lots of vitamin C, lots of B and I think magnesium. Lyme depletes magnesium I read.

I see that the new Lyme forum is up and running. I posted a note there for any of you who are Lyme people! I sure hope this forum takes off and doesn't get overlooked.

I am looking for suggestions for supplements for my son who has Lyme. He takes zinc, magnesium and vitamin c. I read somewhere that Lyme patients shouldn't take vitamin c and possibly zinc. Has anyone heard this?

I think this is the route we are going to take, especially since we have seen such great improvement with mood in the past few days. I'm hoping that's a sign of more positive things to come. I am just afraid of making things worse with IVIG.

Thank you for sharing your story. I am glad to hear that your daughter is doing so well. Thank god. I'm no Lyme expert either but I do feel confident that my son has Lyme because I had it (still have a low cd57, for what that is worth) before he was born (I was improperly treated) plus he had 6 bands showing on the IGenex. With that said, I am not 100% that we have PANDAS. So maybe we are the reverse of your situation?! It is so hard to know what to do and sometimes it is just a leap of faith.

My son(10) was diagnosed with Lyme recently (IGenex positive and 1 band shy of CDC positive - plus positive for 31 & 34). He has probably had the Lyme since birth. My son has also been diagnosed by Dr. B as having PANDAS (or maybe PITANDS at this point). He has a very high c3d immune complex (45) and we have been approved for IVIG. Right now my son is taking Augmentin & Zithromax daily and his mood is SO much better these past few days. He has been on these antibiotics for 6 days. He still has his eye tic. My husband and I are on the fence about proceeding with the IVIG because of the Lyme diagnosis. When the dr explains the reasons for IVIG, it makes sense but something in me is just not jumping on board. Maybe it's the stories I read or the fact that I can't really find anything saying that IVIG helps Lyme. I just don't know. I am wondering if anyone has any experiences with having done IVIG with a child who tested positive for Lyme. Did you treat the Lyme first or do IVIG right away? Regrets? Recommendations?

My dh asked me the same question before we sent off our IGenex kit! We were fortunate that my son's test came back positive (that wording just sounds weird in this context) because we didn't have to explore what to do if it's negative. From what I have heard, it is very possible to have a negative Igenex test and still have Lyme. Because my son has had Lyme for so long (possibly born with it) I think the few months of antibiotics helped him to have the positive response. So ironically it was probably good that we went the PANDAS route first, had the antibiotics, and then tested for Lyme. I'm sure more experienced Lyme people will chime in about the false negative result.

Just to add my two cents, I agree with this statement. My son has recently been diagnosed with Lyme & PANDAS and the PANDAS Forum has really been the one place I have been able to find conversations about children with Lyme. Other Lyme boards seem to be more about adults with Lyme. I also want to add that I am somewhat confused about splitting up the forum. While I understand that the recent talk of Lyme is probably a bit much for parents whose kids do not have Lyme, I thought my son's diagnosis of Lyme and PANDAS would put us under the PITANDS heading. Am I wrong in thinking this is where we belong?

My non-PANDAS son got this when he first started college 3 years ago. There was a girl who went to a college near us that got meningitis. Her story scared the heck out of me. I am hoping that by the time my PANDAS/Lyme son goes off to college (he's only 10), he will be well enough to have the vaccine. I was under the impression it was recommended for situations where kids will be in close quarters (dorm rooms,etc).

My son is 10. Our dr has recommended checking titers before any shots are given so that's the direction we will be going. We know his DPT levels are within normal range and he's had two varicella vaccines which is what is required by our state. We will also be opting out due to neurological issues as this is listed as reasons against getting the DTaP or Tdap vaccine. I wish I had read these guidelines years ago

Which ones are due at 11?

Our naturopathic dr advises buying local raw honey as it's supposed to be better for the body to eat things locally.

Our drs (one PANDAS, one mainstream) has said that ear infections are typically caused by strep. Just food for thought.

Great news! Where do you find this? We are still trying to get Aetna to approve our request.

So glad you're making progress. Keep up the fight!

Great news. Thank you for the head's up too.

We just got ours back last week and I was able to interpret them pretty easily myself. Our immunologist was also able to decipher them. My son had pretty straightforward bands that were positive though - 31,34,39,45 and 58. I can imagine if you have some indeterminate bands and/or maybe just one or two bands then a LLMD might be helpful. You will probably want the help of a LLMD for the antibiotic protocal too. Some people recommend searching and booking for a LLMD now just in case your results are positive since they book so far out.

Anyone have any thoughts on which one you would go to if you had to pick one?

Hi Lynn, I tried to send you a PM but it wouldn't go through. Is your mailbox full or blocked? Thanks. Justine

I get that if you have a clear documented strep history, the symptoms plus a PANDAS range Cunningham test, then you can feel pretty comfortable that you are dealing with PANDAS. BUT didn't Dr. Cunningham acknowledge that Lyme can produce the PANDAS range on the CAMKinase tests? If so, how can you tell which is which if you only have the symptoms and a high CAMkinase number? I know she thinks that there is the possibility of strep still being the culprit with these kids and the strep tests just aren't showing it but that's still not proven yet. Wouldn't this scenario be when you would want to rule out other infections?

I agree. I think you take what you want away from this forum. I read everyone's posts, do my own research and then bring it all to our dr(s) for the ultimate decision on what our next step should be. It is an evolving process and I am still trying to understand what my son's overall diagnosis should be. I thank this forum for stirring up the Lyme debate as I would have never connected my own inproperly treated Lyme diagnosis (bulls eye rash) prior to conceiving my son. Who knew that was "part" of the puzzle. It may be the whole puzzle, we are still traveling that road but I'm hopeful that it's one step closer to healing, which like the rest of us, is our ultimate goal. I hope everyone keeps posting and doesn't feel pressured into stopping because I really appreciate the various ranges of views and experiences.

She is also looking into Lyme being transferred in utero. She was not aware of the possibility until recently. It's so nice how open she is to new ideas and theories!