Jump to content
ACN Latitudes Forums
  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

Recommended Posts

Me again. :(

 

Nothing is helping our dd. Nothing. Over 10 years of extreme anxiety, (and I do mean extreme), OCD, intrusive thoughts, anorexia nervosa, etc... We're always thinking we've found an answer, but it never works out. Current doc is beginning to think it's just her low weight causing all the trouble, even though we've told her repeatedly that this started years before the eating disorder, with urinary frequency and anxiety. Everyone wants this to be "mental" so they don't have to deal with it. Dd recently became extremely exhausted, nauseus, heavy leg feeling and temp as low as 94.2 - but doc insists it's because she doesn't eat enough protein. (We've told her REPEATEDLY that dd eats LOTS of protein - but once "eating disorder" is thought of they assume it's all connected to that. Ugh... Fortunately, this illness occurred at the same time I requested some labwork, and the labwork came back positive for mycoP and positive for ASO titer. Sadly, she's been on abx for them, and it doesn't do any good.

 

We went to a psychiatrist who specializes in methylation issues. It's obvious from his office protocol that he leans toward metals issues. (You know what I mean... some LLMD's assume everyone has Lyme until proven otherwise!) The thing is, he did do a provoked metal test and dd DID show high lead and mercury. According to this doc, that is why dd takes abx for strep, myco, etc, etc, and rarely clears it. He says the metals are screwing up her immune system so she is unable to respond correctly to the abx. I've researched a lot of what he's said, and it does seem to make sense. (But doesn't it all at the time when we're desperate and tired?)

 

IF he's right, and getting rid of the metals helps her immune system, then all these weird symptoms of so many other things she has might actually go away. Wouldn't this explain why the PANDAS/PANS kids KEEP getting sick over and over? Something like metals is keeping the immune system screwed up, and that's why there are recurring problems? Antibiotics never bring our dd anywhere close to a baseline - although they can help with extreme fatigue and the kind of intrusive thoughts where she literally grabs her head and screams, "Please make them go away!" But the thoughts are always there, and the anxiety for her makes life not worth living. Another year, and college classes have to be cancelled AGAIN. She truly has no life and nothing to look forward to. She worked her butt off to get a wonderful scholarship, and this disorder has taken it all away.

 

Has anyone tried removing the metals to see if it helps, or are we just barking up another wrong tree?

Share this post


Link to post
Share on other sites

We detox every day. Getting rid of heavy metals was one of the first things we did. Also take powdered rose hip (in juice or water) to get rid of biofilm that can protect bacteria/viruses from treatment.

Thyroid been checked? Mold investigated? Lyme doctor visit?

Share this post


Link to post
Share on other sites

juliafaith - yes, she has had her thyroid checked and is on Armour Thyroid. Yes, mold checked also. She has the HLA snps that show she might have trouble getting rid of mold, but testing didn't show she had any in her body. Her Lyme testing has always been indeterminate. I'd love to treat her for Bartonella even though she's never tested positive for it, but I'm afraid her integrative doc is worn out trying things and I'm almost afraid to ask. The psychiatrist that wants to treat the metals doesn't seem interested in treating anything else because he thinks getting rid of the metals will solve the other problems. I'm just not sure what to think, but we are all beyond exhausted.

Share this post


Link to post
Share on other sites

We have high lead along with mercury. Same ratio in all of us. DD also has a few other metals, highest mold issue, lowest immune function was under weight - 7% on growth chart. Kids are low on protein and eat tons of it. Monthly LD IVIG has really helped... Huge growth spurt.

 

In our experience heavy metal chelation caused an increase in symptoms. The metals do attach to the bugs and help to form biofilms. Metals can also take a long time to resolve. Our Dr.s are estimating 18 months.

 

I am curious how you tested for mold? Have you done full Shoemaker Panel? Our experience is it took both the panel and Real Time Labs to determine if mold was an issue.

Edited by sf_mom

Share this post


Link to post
Share on other sites

sss- her mycoP and ASO just came back elevated. She's been on either Doxy or Minocycline for 4-5 months now. Abx don't seem to knock anything out. Yes, she did do IVIG - didn't help at all.

 

sfmom - she did the Real Time Labs mold test where they test for 3 different mold toxins to see if they are in the body. Negative for all, even though she has the HLA genes. She also tried cholestyramine for a week or two. She didn't get up to full dose, but we saw no change either way.

 

juliafaith - Yes, we've tested for h.pylori. It was positive IGG, but the doc treated for it anyway. That was several months ago. She just retested and the IGM is negative and IGG positive, so assume that is showing her past infection. She has also been on Armour Thyroid for a month or so. Haven't seen any benefit from that either.

 

We did get results back from a urine broth test today. She showed high levels of Strep group D and citrobacter something, I think it started with a "k". Not sure what that means yet. Her nurse practitioner should be calling in a script to treat those. I'm not getting my hopes up. She tests positive for all kinds of stuff, and treatment never helps with the mental aspect.

 

Thank you all for your input. All is appreciated.

Share this post


Link to post
Share on other sites

I would still do Shoemaker Panel for mold. I understand mold is like metals. You may not be be dumping toxin at time of test. Per a mold expert here in CA any C4a over 10,000 indicates mold. Shoemaker will help make the determination if mold is still an issue.

 

We have been doing cholestyramine for 10 months. It takes at least 4 months to start making progress on toxin overload. Definitely saw an increase in symptoms with daily cholestyramine. We just retested older son for first time to see how his numbers have dropped.

 

It has also taken at least six months of LD monthly IVIG to see progress for DD. Her IgAs are still at 24. She is still low in subclass 1 and overall serum levels. I am told it can take up to a year to see solid results with IVIG and chronic Lyme et al. The protocol we are following is Dr. K out of CT. He spoke at ILADs and has written about neuro-Lyme and use of IVIG.

 

Also something to consider... Testing for oxidative stress.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...