Cunningham question/Lyme autoimmune component

[cobbiemommy]

For those of you with experience with Dr. B; will he order Dr. Cunningham's Moleculera Labs testing? I feel like we need to know what is going on in DS's brain.

 

After almost ten weeks of IV abx for Lyme/Bartonella, he seems much the same: He is still talking to himself; he still is picking at his fingernails and toenails, and he still laughs hysterically (inappropriately so) at children's movies and while watching TV.

 

My theory is that we are killing the Lyme, but there is an autoimmune component going on because he was sick for so long before proper treatment was begun.

 

He has had a lot of joint pain and headaches as we have went through the IV abx process. Those symptoms seemed to have subsided, but the anxiety and OCD type stuff still seems to linger on. We have about 2 1/2 weeks left and I am starting to panic that this will not work...

[LNN]

Even if you did find a high CamK or elevated anti-neuronals - how would it change your strategy? My DD (CamK 183, antilysogangliosides >1200) did not have Pandas, may have had lyme (treated for 8 months) but ultimately got rid of her OCD/neuropsych issues thru methylation treatment. My DS (CamK 179) did not get well with Pex or IVIG - just many years of abx, supplements for pyroluria and recently yeast/biofilm treatments.

 

So even knowing they had high CamK and an autoimmune inflammation component - the only thing the CamK did for me was reassured me that the neuropsych was infection-triggered and not lifelong. I don't know that it was helpful in terms of treatments that worked or didn't work. What would you do differently with a result?

 

edit - i don't mean for this to sound so negative. When I first did the test, I "had" to know what was going on. I get that. But it was before we had an expert on board and I felt I needed it to give me scientific validation (and it was "only" $400 not $900). I play devils' advocate here because you already have a doctor on board willing to treat. So I'm not clear on why you want to do the test at this point. Also - have you tested for yeast? The inappropriate laughing caught my eye.

Edited July 9, 2013 by LLM

[cobbiemommy]

We are and have been treating for yeast, so at this time I don't think it is the issue. He takes nystatin, pearls, and sacchromyces. The laughing and hand flap is almost like a seizure kind of thing, and only when exposed to certain stimuli. The reason I keep thinking autoimmune is he responded so very differently to steroids and IVIg. He was probably at 95 percent, which is saying a lot! He was more quiet, did not pick his nails, and was very mellow/happy and did not laugh like a maniac at immature for his age things. He would tell jokes and laugh at my husband's jokes, but as he is now, he is does not laugh at typical stuff, only very juvenile stuff.

 

I think if the cam kinase was still elevated, it would boost his chance of getting insurance approval (reapproval) by demonstrating that the autoimmune component is still going on.

 

We are seeing a neurologist at University of Kansas in two weeks who does testing for mitochondrial issues; so I am hoping he will be on board with Dr. B and Dr. J. If he is negative or dismissive; he will be dismissed.

 

I don't take any criticism personally, here. I feel like this is a very well educated group of parents and we are all searching for the right answers, but there is not one right answer.

Edited July 9, 2013 by cobbiemommy

[T_Mom]

Hi -- since he responded so well to steroids and then IVIG, getting to 95% -- that is huge.

 

Did the lyme/bartonella come back in Western blot testing? -- or was it just one or two bands?

 

The reason I ask is that our d (13) was identified as "having" lyme last year as a result of two bands, and we lost about 4 months of her year as we chased down the lyme rabbit hole (no flying tomatoes please!

...we saw Dr J in Conn......etc. etc. It was exhausting and disappointing.

 

She was put on very strong antibiotics and after months now I think that some of her negative reaction may be related to the level of antibiotics -- or the combination being too much for her--

 

I want to raise this issue as it seems for some kids too much abx could and does cause an overload reaction. (Could this mistakenly be seen as "herxing", I think in our case it was.) We watched in horror our daughter's reaction when put on Tindamax, and subsequently she has been on Augmentin and azithro now for months.

 

What does your gut tell you?

 

If you think it might be better to treat according to an autoimmune construct, since past treatments were successful, then I would certainly discuss with Dr B. and look at another IVIG possibly--

Edited July 9, 2013 by T.Mom

[cobbiemommy]

He tested CDC positive in Deceber of 2012 through Quest (of all places). Previously, he had numerous bands, but was not CDC positive. His gallbladder was not working very well, but I don't know if that is Lyme related or abx related.

 

Due to the pencil necked bean counters at our insurance company, DS was denied IVIg after being precertified for it. He had three and was doing very well, but after they were stopped, he spiralled back down. We are not as low as when we started, but we are not doing nearly as well as when he was on IVIg or steroids.

 

Because of the insurance problems, I need another piece of the puzzle to get them to authorize the IVIg. We cannot afford another IVIg with Dr. B. DS weighs in at 195 pounds and the cost of the medicine is just too much for us to handle at this point.

 

So tired of this fight...