Complement C4a & Lyme - depressing news.

[trintiybella]

My child has high C4a, lyme and bartonella. I read the following online. Does this mean there is not hope that my child could improve?

 

"This article states that C4a is often raised in patients with chronic Lyme disease. I suspect that's true, because many patients with chronic Lyme also have mold problems.

The LLMD here states that patients who are treated for Lyme and still have C4a elevations tend not to experience neurological improvements."

 

​Is this mold in the body coming from the house? What test can I start with to check for mold?

Thanks

[LNN]

It means your child may not see sustained improvements until you eliminate the source(s) of the mold. But after that, you could see lasting improvements. Think of it as being in a box within a box. The lyme could be the inner box and the mold the outer box. You need to fight your way thru both, but until you remove the outer mold box, you won't see daylight. Once you do remove it, the lyme box becomes much easier to break down.

 

Mold is a tricky subject.You can go back to the forum archives and find a lot of discussions around the '11-'12 time frame. You may want to have your doctor test your DDs HLA-DR gene status. This tells you how well or how poorly the body can handle mold and lyme toxins. Mold is everywhere and you can quickly spend tons of money chasing it. Remediation of large areas (greater than say 4'x4') requires professionals or you'll spread the mold spores while you're trying to remove the source. But I've found that even small amounts cause neurological symptoms in my kids (eye blinks, brain fog, compulsions). Mold on my washing machine drum, mildew on the bathroom window from steamy 1/2 hr long showers, mildewed cardboard boxes in the basement, and even mold that grows in the soil of house plants - all have been issues. When they were removed, the kids got better.

 

So where do you start? Personally, I started with the cheapest things first. Do a thorough inspection of your house. Clean out the basement. Inspect areas under sinks and behind the trap door that's usually behind the faucets of showers (usually in a closet or cabinet that abuts the shower). Inspect the attic, making sure the insulation is dry and there's no mildew on the rafters. Pay special attention to areas near any vent pipes that go thru the roof. If you've ever had a leaky window or a drafty door, pull the molding off around that area and see if you detect moisture. You can buy a moisture detector from Home depot for @$15 - if you detect moisture, you probably have mold in that spot. If you have carpeting and a pet who's soiled that carpet, there could be mold under the rug.

 

You can buy mold test kits from any hardware store - about $10/kit. These kits are notoriously unreliable in that they often fail to detect issues. A clean plate doesn't mean you have a mold-free room. BUT they're a very cheap place to start. If mold does grow in the plate, then you know you have an issue without having to spend $$$ on mold inspections and it'll help you evaluate which rooms may be more contaminated than others, helping you zero in on your hunt. The directions tell you to expose the plate for an hour. Instead, expose the plate for 24hrs. Many slower growing molds or molds with lighter weight spores won't drop onto the settle plate in just an hour. A 24 hour sample is more likely to catch samples. Wait 48-72 hrs and see what grows. You can then mail the plates away for the co. to tell you what sort of mold you have. Not all molds are equal in their toxicity.

 

You can also do an ERMI test, which I think runs @$400. I've never done this but you can find old posts from those who have. Of course, other places where your DD spends a lot of time could also be part of the problem - school for example. And you may never know if the school has an issue. But start with the home first - plenty of things to investigate there.

[sf_mom]

What is your child's C4A result?

 

A Dr. in our area believes anything above 10,000 is indicative of mold. However, all our children had normal C4A's at roughly a 1,000 each and improved with Lyme treatment so we thought mold was a non issue. We were wrong. If you want to get a better perspective or baseline of mold for your child I would run the Real Time Labs Mycotoxin Urine Test. It will provide what type of mold it is and current levels. Like LLM stated it could be coming from anywhere even your child's school.

 

You are lucky to have found the mold at the front of treatment as it can really stall recovery and hinder antibiotic therapies. Our older son is doing the best he ever has since moving and detoxifying for mold. He no longer suffers from what would be considered traditional PANS symptoms of TICs/OCD. Our entire family has improved and I am officially off antibiotics since the beginning of the year. Mold was a huge problem for us as well as the Lyme and co-infections.

[nicklemama]

I think a really high C4a indicates mold. Lower but still high numbers indicate Lyme. I have a high C4a but not astronomically high. I also have lyme. I'm about 11 weeks into treatment and I'm feeling better. I have more of the arthritic form of chronic lyme.

[trintiybella]

We have been doing treatment for lyme/bart for years and are just learning about the mold thing. Her number is 3011.2 and the reference range is 0.0-650.0

She had a urine test in the past that showed high mold and fungus. Can't remember if it was One test or OATS test. Can she be high mold from something else other than environment? Could it be from fruit or other foods? We had our old house tested by experts and nothing was found and all her symptoms were still really bad.

 

The only time I have ever seen my child not look dazed, confused and clear minded without OCD and hallucinations was in Hawaii years ago. I always wondered why. Perhaps there is low mold count there???

 

We had some in depth genetic testing done with Dr. T. I will have to look to see if he checked for that HLA-DR

Edited April 27, 2014 by trintiybella

[red]

C4a is NOT mold dependent. C4A is just an indication of inflammation and be a result of many sources. Shoemaker is adamant that only Quest perform C4a because they send the test out to "The performance characterisitcs of this test have been validated by National Jewish Clinical Reference Laboratories. It has not been cleared or approved the the U.S. Food and Drug Administration. The results are not intended to be used as the sole means for clinical diagnosis or patient management decisions.

This laboratory is certified under the Clinical Laboratory Improvement Amendments of 1988 (CLIA-88) as qualified to perform high complexity clinical laboratory testing.

Performing Laboratory National Jewish Center Imm Med 1400 Jackson Street Denver, CO 80206-2761

Doing an in house ERMI is the only real way to test for mold.

You can spot test but mold can be behind the walls and therefore hidden from spot testing. I myself have used Mycometrics for the last decade.

http://www.mycometrics.com

Mold is processed by the liver and not by the kidneys. Shoemaker says that there is no direct test for mold in the blood. Mold spores are fat soluble hence they settle in the brain tissue which has a high amount of fat. Mold is found in cholesterol which is processe in the liver. Shoemaker uses cholestyramine because it bind directly to bile. The bile has mold and cholesterol in in. Through the bile binding process the bile is extracted and the eliminated through bowel moments. Once bound up by CSM mold cannot escape back into the blood stream. New clean bile is produced by the liver and the process starts all over ever time you take CSM. I fail to see how a urine test could show mold spores. And if the person is excreting mold via urine that would be a good thing. The reason some of us get sick from mold and others do not is because we cannot process the spores as a foreign toxin: hence it builds up in our blood stream making us sick. Shoemaker has identified about 8 HLA types that are susceptible. I strongly suggest taking the VCS, visual contrast sensitivity test. It can be found on Shoemaker's site. There are no false positives for this test. If it shows neurotoxins then you have neurotoxins. The are some outliers who have mold but they have a normal VCS test.

If I read it correctly OATS tests for yeast which is different than environmental sick building syndrome mold. SBS mold it inhaled and ingested through our food as the spores settle out inside the house.

Common sources of food mold is peanuts, cheeses and some fruits. Most food sources like fruits and cheese you can see the mold. Nuts are harder to find because the source comes from bad storages practices before the product comes to market.

Edited May 3, 2014 by red

[FLmom]

My son had high C4a in August 2012. I believe it was around 4000. I used an ERMI test for mold, and came back with a "2" rating on a scale of 1-4. So it didn't seem like we had a major problem if any. I did get rid of my son's waterbed just in case that was an issue. He also had one positive band for lyme-41which could also be other things, but the integrative doctor thought it was likely lyme or mold.

 

His C4a was retested in November of 2013, and was within the normal range. I have no idea why it went down. I haven't seen any outward improvement.

 

I am about to have him tested for lyme with Igenex as soon as we make it in to have the blood drawn.

[sf_mom]

Mold can come from any environment and is often found in certain foods. Our children's C4a were also normal at 1,000. We only discovered mold when we did the Real Time Mycotoxin Urine Test....

 

Here is some information on their test. They actually look for the toxin associated with the mold. The toxin's from mold and lyme can reek havoc if you can not detox properly.

 

http://www.realtimelab.com/patients-mold-and-mycotoxin-information/mold-information-mycotoxins