Lyme/Mold gurus - help me out here LOW CD57

[mdmom]

Read my signature line. We've been aggressively treating Lyme & Co and lots of other issues for almost 3 years now.

 

When we started this journey in 2011 my son's CD57 was 14.

 

His CD57 is now 6.

 

Seriously? LLMD said that Lyme is not the only thing that can suppress this - Babesia can cause low CD57 as well.

 

What about mold? Can mold suppress it as well?

 

So frustrated....

[searching_for_help]

I really don't know about mold affecting the CD 57, but PANDAS kids are notorious for reacting to anything! I've read on forums that, when treating for Lyme, the CD57 numbers usually go down before they go up, but 3 years seems like a long time to me. I don't think the medical community really knows what all affects the CD57 numbers. It's supposedly things bacterial (viral infections often RAISE CD57). I've heard Lyme, mycoP and HIV can affect the CD57 numbers.

 

This pdf is really informative. "Leading Experts Gather to Decode the Mystery of Chronic Illness".

http://www.publichealthalert.org/uploads/2013_1.pdf

pg. 6 "CD57 is often a useful screening test, but is not always useful in tracking progress as it stays low until the very end and then rapidly rises."

"When CD57 is below 20, this suggests multiple coinfections." (So maybe there is more going on...)

 

Hope someone else can jump on and help out. Our dd CD 57 is very low, also. We're just now starting treatment for mycoP. BTW, she did test positive for mold allergies, as well.

[LNN]

Our LLMD doesn't use CD57 on kids - doesn't feel it gives reliable info. He uses C4a and HLA-DR tests for mold suceptibility, so you could look into those to see if you need to go on a mold hunt. Here's a list of tests Shoemaker uses: http://www.survivingmold.com/diagnosis/lab-tests

 

I don't know a ton about mold, despite going down the mold trail twice now. Some of Shoemaker's tests showed DS was struggling with inflammation and toxins so we emptied the basement of 10 yrs of clutter, mildewy cardboard boxes, etc - 8 trips to the town dump on the hottest day of the year - if DH didn't leave me then, he never will. DS's symptoms improved after that. He made great progress with lyme for 1.5 yrs and went off abx last spring. He was good for a short time, then relapsed. We treated yeast and he was 90% better but still had an eye blink tic. Shoemaker's labs again came back somewhat elevated so last weekend, I went on another mold hunt - and found some on the bedroom and bathroom windows. The wicked cold air outside had collided with warm inside air and made enough condensation that mold was nasty where the two double-hung windows met. The kids' bathroom window was really bad (they've developed a love for hot showers). You wouldn't think such a little bit of mold would be a problem but for DS it was. I cleaned the windows, vacuumed with a hepa filter and the next day, the eye blink was considerably less. Within 2 days, it was all but gone. A week later, I may have seen the eye tic once in 3 days. I know it sounds nuts, but for DS it caused significant neurological symptoms.

 

So I guess where I fall on mold is do the Shoemaker labs (not necessarily all of them - I'm sure your LLMD has ones he/she prefers). Then if they suggest mold reaction, go hunting. I know you can go back to the archives and find lots of discussion in the '10-'11 time frame (lord, I've been on here too long). about ERMI testing and mold treatments. Some have found major problems, requiring major expense. I've been able to avoid that and take care of simpler issues and gotten good results. Depends on so many factors. But I think the blood work is a good place to start. Mold can be an enormous money suck. Start with data from the body.

 

Other things that stalled my son's progress- pyroluria and methylation roadblocks. If you're not seeing sustainable progress, it seems that there's something you're missing beyond lyme.

[sf_mom]

MOLD!!

 

We had an unfortunate event happen this last summer. A 150' pine tree fell on our house and took down an old growth oak with it. There was extensive structural damage to the home. When the tree fell it brought a plume of debris through the house and we definitely noticed a immediate change in our younger DD and a mild slow regression in older DS. We weren't sure if it was the stress of the event or the toxic debris. When we started investigating the damage to the home by pulling off the roof and siding we found behind the walls both white and black mold. The smell of the house changed instantly when the tree fell and has not abated. Thankfully, no one was hurt, we were well insured so our insurance paid to have the house environmentally tested. We had it all: lead, asbestos and now high concentration of Trichothescene (black mold) especially in the rooms that were impacted. 500 times more concentrate in the bedroom section verse living room.

 

I mention all the above because at that point we felt we had to test all of our children extensively for mold. All three previously had normal C4A. We did the Shoemaker Panel and there was some indication that older DS might have a problem but not much... MSH was a little low and his TGF-b1 was a little high. We also did the Mycotoxin Urine test by Real Time Laboratories and they found our older son was positive for Trichothescene at 6.98, reference range .18 to .2. Same mold that was found in high concentration in the bedrooms that the tree impacted. We are now treating for mold.

 

I highly recommend the Mycotoxin Urine Test. It is a little expensive but was well worth it. We are using the results as a baseline to determine detoxing abilities. I think with CD57s that low you really have to look at all angles. Another test that should be on your list is Nagalase (treating can help get the CD57 numbers up).

Edited January 25, 2014 by sf_mom

[JuliaFaith]

Lots of good info. on this thread. We also had to deal with mold. Testing for it is a really good idea. My son tested positive thru ART muscle testing and was started on anti-fungals pretty quickly. There are other ways to treat it too.

 

After remediating a bit for mold (attic was the worst), he has not been testing for it. Although, after 3+ years of treatment he is still detoxing with chlorella and other things. Thyroid was off in all of us and dh had lung/sinus issues. With your entire family having issues, having an ERMI done may open the door for more answers.

 

Ds CD57 was 25 when we started all this and after 2 1/2 yrs. of treatment, he was at 48.

 

Viral numbers have also been high the whole time. So we checked nagalese and found him high at 1.3 (.9 or below is healthy). After 3 months of gcmaf.eu treatments (for virus/immune-system) his CD57 went up to 70! Pretty quick jump! Doctor wants to see it at 100. So wondering how viral numbers have been?

 

All of us will probably be detoxing one way or another the rest of our lives just because our environment is very toxic and so are our bodies.

 

Hope you can find more answers soon. After 18 months of treatment for lyme/co-infections/mico etc, my son was testing 'healthy' until he had a PANS flair which added another year of treatment.

 

Have you looked into anti-parasites? Our lead doctor thinks this is huge in a lot of chronic health issues. Easy way to treat daily: cilantro put in boiling water/simmer for 10 min, turn off and cool a bit, add Miso. Drink every evening. Tastes pretty good.

 

Sincerely, your out-of-the-box forum friend!

Edited January 28, 2014 by juliafaith