C4a results, questions

[searching_for_help]

Our doc wants dd to start either cholestyramine or Bind, due to C4a results being high. (C3a was normal).

 

My concern is dd's urine mold results were negative, and from what I'm reading, elevated levels of C4a can be due to other things such as Bartonella (which she did have the rash this past spring). I realize it could also be due to nasal staph, but she has not been tested.

 

I get a bit tired of docs like Shoemaker making EVERYTHING about the topic they are studying, (in his case, mold), when the test results can indicate lots of other things.

 

Is it worth going through the time and expense of the binding agents if mold isn't the issue? Is the mold urine test definitive - I think we spent around $700 out-of-pocket for that test a year or so ago! I just wonder if the binding agents are worth going through if mold isn't the issue...

[mama2alex]

We see a doctor who's very experienced with mold illness. He said the rule of thumb he goes by - and this came through seeing many lab results for many patients - is that a C4A result over 10,000 is very suspicious for mold. His patients with Lyme, but no mold, have pretty much been under 10,000 on the C4A. My son's result was about 18,000 initially and mine was over 25,000. He did not just rely solely on the C4A to make a diagnosis though. We tested our home with the ERMI and it was high for mold. Also, the doctor ran a number of other blood tests that Shoemaker recommends on his website: VEGF, MSH, MMP9, TGF beta-1, etc, plus the vision test and nasal MARCONS swab. They all pointed toward mold. So I would recommend running some or all of these additional tests and see which way they point - especially the home testing with ERMI, if you haven't already.

 

I don't have any experience with the urine test, so I can't comment on that.

 

I get the frustration with Shoemaker. He's seems to have a bit of tunnel vision on his topic and doesn't communicate very clearly, imho. It's been extremely helpful for us to have a sensible doctor who understands both Lyme and mold illness and can communicate clearly about both.

Edited January 13, 2016 by mama2alex

[searching_for_help]

Thanks, mama!

 

Yes, she did other testing as well, although I assumed the mold urine test would be a big factor in determining treatment. It was done through RealTime Labs, which I thought was Shoemaker, and it was called the Mycotoxin Panel. It was all negative.

 

She has not done the nasal staph swab. (Just curious, is it painful?)

Strangely, the VCS test was "pass" for one eye and "fail" for the other! (I failed both..., I've got Lyme) I e-mailed Shoemaker about why her eye test would show those kinds of results, but never heard back from anyone.

 

Here are some other things tested:

 

% CD8/CD57+Lymphs: Result: 0.5 LOW (ref: 2.0-17.0)

Abs. CD8-CD57+Lymphs: Result: 13 LOW (ref: 60-360)

MMP-9: Result: normal

TGF-b1: Result: 7920 HIGH (ref: 344-2382)

MSH: Result:11 (Shoemaker says under 30-35 is LOW) (Ref: 0-40)

VEGF: Result: <31 LOW (Ref: 31-86)

Leptin: Result: 2.7 LOW (Ref: 4.7-23.7)

Interleukin 1 Beta: normal

C3a: normal (I don't have numbers)

C4a: high (I don't have numbers, but am trying to find out.)

11-3-52B multi-susceptible

13-6-52B mold susceptible

 

She's been diagnosed PANDAS by Dr. K and Dr. L, and has Bartonella, and possible Lyme. She's been treated with a lot of antibiotics, but none in a combo that I would consider helpful for the Bartonella.

 

I'm just putting this out there to see what suggestions/thoughts, etc. you all might have.

[LNN]

You're right, Shoemaker does have blinder on and I'd love for him to be more balanced. But your other labs do seem to support mold as a possible issue. My DD had high C4a (8000)- which from my readings, only seems to go high from lupus, lyme or mold. From there, like Mama's dr, our LLMD did some of the other Shoemaker tests. DD's MSH was undetectable. Her issue seemed to be mold and MARCONS.

 

No, the MARCONS swab isn't painful. Paying for the various treatments - that was painful.

 

We did CSM for several months but I can't say I noticed any huge benefit. It wasn't expensive at all but DD couldn't drink the stuff. It was nasty. So I put it into empty gel caps and she took those. Not sure if the gel cap somehow made it less effective, but it was the only way she was going to swallow any. I think of CSM as a stop gap measure. For DD, the only thing that got her feeling well again was to remove her from exposure (school building) and then fight a long battle with MARCONS. It's really hard to get rid of and can bring so many of the same symptoms as Lyme - muscle pain, fatigue, headache, nausea, dizziness, brain fog... Shoemaker's paper on C3a and C4a is here http://www.jacemedical.com/articles/C4a%20C3a%20testing%20for%20Lyme%20disease.pdf

 

I haven't read it in awhile but I seem to recall he ends up saying elevated C3a is lyme and C4a is more mold. I can tell you my son didn't get better from lyme until we got him out of the same moldy school building that caused my DD so much trouble. So it's not like you can't have both lyme and mold issues. But go with your gut.

 

 

[searching_for_help]

Thanks, llm. DD has been worried about the nasal swab, although we're not sure she'll be having it done.

 

BTW - they just e-mailed me the actual test result for C4a. It's high, 4041, ref. range 0-2830

 

So has anyone done the RealTime urine test for mold?

[sf_mom]

Yes we did Real Time Labs and it was very helpful in determining mold. Our C4a's were normal at around 1,000 (4 of us were tested) and we did not investigate mold as a result.

 

In the summer of 2013 a 200' Monterey Pine and Heritage Oak fell onto our home structurally damaging it. When our insurance company and structural engineer went to investigate the damage, siding was pulled off the home and extension wood rot and black mold was found. It was all behind the exterior siding. The home was then tested for mold and EMIs came back at 97.4. Off the charts for black mold. We then tested everyone with Real Time Labs and we were all positive. DD had the highest mold levels our LLMD had ever seen and was positive for all three types.

 

It is hard to say how impacted we were on daily basis prior to tree falling. After the tree fell, the smell of the home changed and we were told not to enter without face masks. The home had to eventually be demolished due to structural damage and wood rot. We are grateful for the whole incidence as all our health has improved greatly since moving (day tree fell) and detoxifying for mold. My mold levels are now normal and I have been off antibiotics for 2 years. Kids are still on pulsed therapy. All have gestational Lyme. DD was looking very autistic at one point and had learning disabilities. She is now in 3rd grade and meets all grade standard. She has come a long, long way in her recovery.

[searching_for_help]

sf_mom - wow, you wouldn't normally consider a tree falling on your house "good luck"! So happy your health and that of your family is improving.

 

Dd's mold urine test was normal, and C4a high. It's strange that your C4a levels weren't high.

 

I just wish testing was more accurate. It's frustrating not to know what we are dealing with, and dd is 23 years old and getting very tired of having her life put on hold due to all the psych manifestations of this. She's the one that got the great scholarship she can't use, while her friends have all graduated and moved on with their lives.

[sf_mom]

I forgot to mention that I spoke to Better Health Guy (not a Dr.) at one point about mold testing. Unfortunately like heavy metals testing, blood draws for Bartonella, vitamin/mineral testing and mold testing. Its all depends.

 

• Heavy Metals Testing: Results will depend on if body is dumping metals at time of collection (even with chelators)
• Bartonella Testing: Results will depend on if Bartonella is active in blood stream at time of collection. Apparently, moves in and out of blood stream every three days. Its why Galaxy Labs does three blood draws every other day when testing.
• Vitamin/Mineral Testing: What is found in the blood stream on a specific day is not what is getting absorbed by ones cells.
• Urine Testing for Mold: Will depend on what the body is dumping at time of collection.

Being 23 and sick has got to be hard!!!!