Where to start again...?

Hi Folks,
I may be dealing with more mold/lyme problems after 3 or 4 years of remission. I'm trying to figure out where to start again this time.....

Background - Previously, I had about 8 years of lyme/mold problems. Tick bite, lyme symptoms, I tried IV abx, oral abx, diets, Rife, IFR sauna, oxygen, ozone. I FINALLY got better after a clean (no mold) housing move and months of CSM, fish oil, and Equilib supplement capsules recommended by my favorite Lyme/mold Dr. Ack**ley in Tucson. After that I was healthy for about 3 years.

Then, about two years ago now, 3 things all happened in less than a week's time:
1) Something dramatically changed in my thinking. It wasn't like depression (I would know!) but it was a big loss of motivation, executive ability, and some mild confusion and poor memory. I had to quit work then. I haven't worked since.
2) COMPLETE loss of appetite. That persisted for about a year, and is maybe 50% recovered at this point.
3) Almost complete loss of libido. (I know that as men age, their libido usually decreases. However, this was dramatic and extremely quick) This hasn't improved at all since then.

At the time, I guessed that this was ultimately lyme/mold related, although the more recent symptoms were different this time (especially the appetite loss and libido). I found a recommended "LLMD" here in Atlanta and consulted with her. She started me on a general probiotic/nutrition plan, prescribed a small amount of CSM and sent me for a bunch of bloodwork (although a lyme test wasn't ordered). ALL of the extensive testing results were fine, EXCEPT my C4A inflammation marker was 12,000 (4 times the higher limit of the normal range!) I'm hearing that it could have been a "false positive" if the test wasn't processed exactly like it needs to be....It was done in Denver by National Jewish labs. I'm just not sure if it was processed here properly here before it went to them.... Also, FWIW, my C3A was at the very bottom of the normal range. (If you have other results questions, I still have the extensive lab results)

Disappointingly, my LLMD didn't seem to know or care about the significance of this result. I quickly lost any faith in her "expertise" and quit seeing her. This all happened about 1 1/2 years ago. Since then I saw a neurologist, an endocrinologist, a psychiatrist, and tried all types of anti-depressants, etc., none of which helped at all, not surprisingly. For a while I just completely gave up on figuring this out. The symptoms, aside from a mild improvement in appetite, haven't basically changed at all since then.

But now I am trying to get going again on trying to sort this stuff out, and I'm guessing I really need to pursue the lyme/mold avenue. Recently, I took another VCS test and passed just fine, which seems to imply that mold might not be an issue currently. I have taken these tests in the past and they have indicated mold issues, but that was a long time ago. This new VCS result, combined with the different symptoms, makes me suspect lyme more than mold at this point. I don't feel I have the tenacity, and certainly any money like I did before, so I really need to be as smart as I can to get this sorted out as quick as I can. Hopefully my lengthy past experiences will help now. I might need a CD57, a PROPERLY DONE C4A test, etc. Maybe I can try ILADS for another LLMD hopefully somewhere near Atlanta. I am also considering finding someone to prescribe a good amount of CSM for a while to see if that might help.

Does anybody here have any informed thoughts on the situation from what I've described? I'm largely interested in the implications of the very high C4A level. For that matter, I'm wondering what other medical conditions I might want to rule out too.

if you have a know mold issue in the past - and resolved after treating - then as WBF logically i would try to firm up the logical exclusion of that before trying other things - as WBF says

after that the sudden loss of libido, drive and executive function are hallmarks of low testosterone - which is common in Lyme patients ( i am kind of assuming you are male here - but actually Low T is also a factor in women with many of the same features)

this could be responsible for the symptoms you describe - but if so if it were me, i would still like to know and treat the underlying cause. eg lyme or co-infection, mold, gut issues etc etc

i just posted some info on lifestyle changes and natural treatments for low T on the other thread - here
https://www.healingwell.com/community/default.aspx?f=30&m=4242777

The tests Biking is referring to are the urine mycotoxin tests, which will show if you have mycotoxins in your body. The only caveat there is it isn’t a reliable indicator of current exposure.

I am curious as to what other CIRS labs you had done besides C4a and what those results were. Be sure also that you are checking the results of any CIRS labs against Shoemaker’s reference ranges and NOT the lab ranges. Here’s a link to Shoemaker’s ranges in case you don’t have it handy. https://www.survivingmold.com/diagnosis/lab-tests

DUMB QUESTION!! How do I Private Message members and can I attach PDF files to that? I've been searching around here for instructions, but can't find any so far....

Spaceboy30000 said...
DUMB QUESTION!! How do I Private Message members and can I attach PDF files to that? I've been searching around here for instructions, but can't find any so far....

You can’t private message - but you can email if the member has their email listed. Click on their forum name and it takes you to their profile

Spaceboy,

I can't see your email in your bio, so it must have not gone through.

I'm sorry I don't have much to offer as I'm just about to begin treating mold, but I have some questions for you if you don't mind: How sick were you with your initial mold issues? And it took you a few years using this protocol? And did you test for mycotoxin loads throughout treatment?

LMK! Best of luck this time around.

His email is listed now

Would love to hear how your appointment went when you have time to update.

Thank you for sharing. Hope you get some progress and resolution to symptoms pretty quickly. Keep us informed. It’s so helpful when folks share information on things. Thx again!

my experiences after spending thousands on testing is that the value of individual tests usually turns out to be a lot less than what i hoped for going in.

typically i find i go in with optimism and, after reading up on them, form the idea that they will give nice clear positive/negative and therefore actionable results

the reality i find is that they are far more often shades of grey - frequently to the point of being of very little value (at least on their own) - and often a test from one lab is totally contradicted by a test from another.

it is after all an almost entirely unregulated industry with very little if any 3rd party validation - and most do not even publish peer reviewed demonstrations of accuracy / sensitivity etc.

what i have found more helpful is using several different tests that looks for similar things but using different labs and different technologies - as an example - for gut issues
-a comprehensive stool test with parasitology from 2 diff labs on the same stool/s
-breath testing - for hydrogen and methane
-OAT test for bacterial / fungal metabolites and inflammation markers

if all three point to high bacterial overgrowth - you can then be pretty sure that's what is going on
if you only tested by one method in my experience its very hard to interpret with any confidence - and a bit more like tossing a coin.

when the decisions are a year of your life or more following this treatment path or another one - or spending 1000's on treatments - it just doesn't make sense to me to base that on a single somewhat dubious test or a single lab.

I'm not saying don't do them - more that if you are going to do it - the diagnostic benefit goes up exponentially the more labs and test technologies you can use - sounds like you are already moving in that direction - but of course the playoff is that its hard on your wallet.

Garzie - you are reflecting one of my general concerns about testing, etc. from my previous experiences with all this stuff! I certainly understand the "general consensus" approach to lab results, etc. Thanks for the input.

WBF - You make a good point. The way I'm thinking these days, what's the harm in also getting an Igenix test too? It's just another $200, after already spending $1000.

A few days ago I decided to pull the trigger and just get those tests I mentioned. I have the same concerns about what these tests might accurately show, but I like this new doctor, and she likes these tests, and after reading up about them, they sound probably worthwhile, so I'm ordering them. Generally speaking, though, I like sticking more to the Shoemaker/Ackerley plan. Generally speaking, I'm not a big fan of spending too much time and money for experimenting off of the most successful, established path for this. Lately, I've been OK with trying somewhat new approaches but only IN ADDITION TO the basics recommended by Shoemaker/Ackerley.

Yeah, that HERTSMI-2 of 14 is concerning. Chaetomium usually is found where there’s been a leak or water source and is a often a precursor to Stachyboteus. The Aspergillus needs less moisture but is usually always present in a water damaged building.

If you plan to stay, someone needs to find the leak(s) and where the mold is. It could be a current leak or a past leak. The source of the leak may not even be in your apartment. It could be above or next to you or below you if there are any plumbing lines between the floor and ceiling of apartments below. Check all plumbing areas for signs of leaks. Could be in ductwork or in walls around windows doors, in cabinets.

I know nothing about MARCONS testing, so I don’t know how to interpret that.

Spaceboy,

Not sure if you will get a notification on this, but I just thought of you after a mention of traveling by plane and staying in hotels with another member yesterday who also deals with mold.

I found what I believe was your last post here. Looks like your apartment had a mold problem. That was a year ago. Did you end up moving, or was the source found and properly remediated? Have you had any symptom improvements?