Mold?

I'm still believing that due to my past and current possible exposure that mold is a big issue for me. The doc's I'm seeing still aren't listening to this especially my current Llmd. I have no choice but to stick with him right now because of my location and my financial situation which is very very dire. I'm now having problems affording food and supplements.

Still living in relatives house because it's still my only option. Im almost
40 and cwnt take care of myself cognitively or financially and its making me feel like i dont want to be here anymore. In the house, on this planet, here period.

Recently, some part of the ceiling plaster fell down revealing water stains on the ceiling. This is the same location of the house where I put one of those home mold testing kits a few months ago and some green and white looking mold grew in it. I never sent it in for testing because then I was diagnosed for sure with lyme and I honestly didn't have the 40 bucks even to spend on it when I needed it for meds, herbs, food, etc. I feel like every single thing that could go wrong since I've started treating has for me. Like someone doesn't want me to get better. It really feels this way and I have no support. No help other then the roof over my head which may be making me sick.

A roofer was called holes in the roof were found and patched up but the plaster has yet to be fixed and don't know when that will happen. My family member does not understand how this could be potentially making me sicker and honestly can't afford to do much about it right now herself. Her priority was to patch job the roof before we get more snow and rain.

I know I had undiagnosed lyme for many years but something caused things to become much more Neuro the last couple of years. This correlates with the roof issue and finding out I was sleeping next to a moldy a.c. over the summer after getting dizzy, even more spacey, etc which had dark colored mold in it. There were other factors too around the same time like a bad reaction to steroids in which I was never the same after before I found out I had lyme. The doc's I was seeing for answers nearly killed me giving me meds to "help ". I believe now my thyroid is also a problem.

I'm trying to save up to see a naturopath but it's taking me much longer then I've wanted.

So for the last few months, I invested in a hepa air purifier for my bedroom and I try to stay in there as much as possible with it. But this is also the same room where I found the moldy a.c. of course that's gone and cleaned around it as best as I could. There's no visible mold but I know that doesn't mean it's not there.

Got a hepa filter for the kitchen , waiting for that to arrive. Also have an essential oil defuser I'm starting to use in both the bedroom and kitchen. I believe the water damage on the roof is more extensive however.

For mold that s probably in my body, been using modified citrus although some days it's hard to fit in it so it was kind of sporatic, recently though I try to take it once a day and doing activated charcoal at night. I believe some of the mold is in my gut but without a doc's opinion I'm only guessing. Definitely has had an affect on my brain and that's what scares me the most.

I feel very anxious and trapped here. I can't leave without money, nowhere to go, etc. I'm so worried I won't get better living in this house. I need a chance here, I need help and no one around me to help.

I still can't remember things or function and when I take my and the fog gets even worse. My llmd told me it's still early for me and I'll get better but again, he's not listening to the situation with the environment I'm living in. He just says mold is everywhere and that's the end of that.

Please anyone, someone, can you help? Maybe I'm just expecting to recover from all of this too quickly? I'm trying to piece everything together. Just came from a sleep study last night because there's definitely issues there though don't know yet if it's caused by these illnesses.

I tried to see if i felt any difference at the study lab in how I feel but only one night. My brain fog was so severe last night I almost canceled and bad while I was there too. Little better there this morning but that s not unusual for me lately.

Walkingbyfaith, if you are still out there and should see this can you tell me how you got through this? I noticed that you mentioned before that you could give me some advice. I'd appreciate it so much.

Please can someone help? I'm trying to stay calm but next to impossible lately and I feel more and more hopeless. Can't work, socialize, be me, etc. No way to live. I can't remember anything.

I only have Medicare and broke because I can't work, I can't afford expensive mold tests for body or this house. What do I do? I can't live on the street like this with my dog.

Oh I forgot to mention this - English Ivy!!!

/learn.allergyandair.com/english-ivy-and-mold/

Plants can be so beneficial in our homes. Make sure you read the last sentence. It is not a replacement for the air filter, but an added tool.

Mergirl - I'm so sorry you have all this going on.

Is the mold exposure holding you back from healing? I don't know. I think you are doing a good job of remediation with what you have to work with.

You mentioned neuro lyme getting worse - it could also be unchecked lyme and co's...it's not necessarily from the mold exposure....even if the timing is right.

You really haven't been treating for long...don't despair....you may not improve until you add something in to treat Bartonella ...or Babesia.

Hang in there - and keep coming here for support.

Mergirl,

I'm still here. I am so terribly sorry for what you're going through and especially the financial straits you're in. If it were not for my parents, I'd be in pretty much the same situation. I'm 47 and haven't worked since the end of March. I finally got my application for retirement due to disability sent off about a week ago, but I was told it would take 6-18 months for them to even make a decision and I have no guarantee it will be approved, though my lawyer expects it to be. As part of the application, I was also required to apply for Social Security disability. That's less likely to be approved. I think you practically have to be dead to be approved for that, but it may take as short as 3 months to get a decision back on that.

about THE MOLD:
I think your instincts and assessment of your environment and it's effects on your health are right on the money. The fact that your LLMD ignores that or has no knowledge of mold issues in relation to Lyme is concerning. I know there are a number of articles that have been published by Better Health Guy and the Townsend Letter as well as talks given at conferences on the matter. The fact that your doctor dismisses this shows he is not fully informed or up-to-date.

about THE LIVING SITUATION:
I don't know what to tell you about your living situation. You said you get Medicare. Do you have a caseworker you can talk to? Most caseworkers have lists of references for agencies that provide various services. You may be able to either get some kind of housing assistance or your relative may be able to get help making the needed repairs and finding and cleaning up all the mold. (As you seem to already understand, if there's been visible mold then there's more mold elsewhere that isn't visible.)

PRACTICAL SUGGESTIONS:
My LLMD told me that people who have to be in moldy environments have to 1) use sauna daily and 2) use nasal washes daily or they will remain sick or get sick again. There are YMCA's that have saunas. If there's a YMCA in your area, go check the place out. Cost is minimal. If there's no YMCA, ask your LLMD about sauna and see if the doc has any affordable suggestions.

AS TO NOT WANTING TO BE HERE ANYMORE:
I have had those feelings, too. My parents and I left our moldy home in Sep 2016, moved in with a relative and are STILL THERE. I paid a doctor-recommended mold expert to provide a remediation plan for my house. He took the money and never provided a protocol. We don't know what to do about the house, which is why we haven't done anything and now we don't have much money left to do anything with. I've been so afraid of a bad remediation job due to my severe mold and chemical sensitivities that I've been paralyzed in a state of inaction. I have times when I feel so stuck in this endless mess, that I want to check out, too, but I don't. And don't you either. God is allowing us to go through this and He's here with us while we're in it. We just have to hold His hand and keep on walking by faith.

I'll keep you in my prayers.

Post edited to correct typos.

Post Edited (WalkingbyFaith) : 1/18/2018 8:04:08 PM (GMT-7)

Girlie, it's funny you mention babesia. I think I have it do to my severe cognition and brain fog problems but LLMD doesn't agree. He thinks it's just Lyme and Bart. I never tested positive for bart or babs but I know they often both come with lyme.

K 07-Thanks. I've heard recommendations for Charcoal, MCP and Benenite clay. Are there benefits to one over the other. Is Clay better then MCP and charcoal? Anyone know? I'm currently taking MCP once in the afternoon and Charcoal when I wake up at night which I always do. TMI but I think I'm starting to get a constipation issue from them. I live in RI.

Too cold for sleeping outside now. I would be kind of scared to to be honest. This yard has fleas, ticks, mosquitos, every possible kind of bug is back there. Plus I have my dog and I always make sure to put preventatives and collars on him but he could still pick something up.

WHat if I did sleep in a tent? I'm assuming I would still need to come in to use the facilities, shower, etc. How would that work?

There is an enclosed porch here. It is dirty and filled with junk but would that be comparable? It's surrounded by windows so when it gets warmer would sleeping in there with all the windows open be the same or no, because it's still under the same roof?

I'm so confused about all of this. Some say what I'm doing is enough and may not be the issue and some say it is. I'm so confused and brain fogged, I can't think straight to help myself. I feel like I'm going to end up in an institution.

I don't know if there are case managers in my state that would help. So far there doesn't seem to be but looking into this now.

Mister Mike said...
Mergirl: You've received some excellent advice so far. Here's my two cents.

The most important thing for someone who has mold sickness (which you clearly exhibit in my opinion as I have personally have suffered with it for a number of years) is to remove yourself from the situation and continued exposure.

Seeing that is not feasible for you right now, the next most important step is to take binders to remove the mycotoxins from your body. Activated charcoal is excellent and is the cheapest of the commonly used binders. My doc has me on 4 capsules 3 times a day. It should be taken 60 -90 minutes before meals – do not take anything else with it. I personally would prioritize this above everything else right now.

Also, you need to sweat as much as you can, so detox baths are great. If you can exercise lightly, that helps too.

Likely part of your issue is that you may be genetically pre-disposed to being “allergic” to mold due to having the HLA gene, likely combined with the fact that your body doesn't detox well. So your body needs helps getting the mold mycotoxins out of your system, which is why I listed the above suggestions.

Don't lose hope. You can and will get better from this. As K07 mentioned, once the weather warms up, try sleeping in a tent outside and see if that helps.

Mister Mike- Can you please tell me a little more of your experience with mold and some of your symptoms?

Regarding the AC. Is that a better option than MCP in your opinion? Are you currently on herbs or Abx? I'm only asking because I take both and need a little help trying to figure out when to take them and if I can take them that often, etc. So far, the MCP and AC together even just twice a day seem, well, binding. I didn't have that problem before.

Would these things help even if I'm being exposed to mold? I know I need to get out of here but I'm wondering how with no money saved and no one to help me organize either. My brain is completely out to lunch. I'll type this and won't remember what I said really until I read it later. It's horrific and terrifying.

Thanks for telling me not to lose hope. I kind of am. I do take the detox bath quite often. Is the whole point to try to sweat in them or just sitting in the salt and peroxide enough?

Each binder supposedly hits a different mold type. I thought MCP should not cause constipation - i have had no issue. Maybe it’s the AC.

K07- Thanks- It might be the AC. I just read that I might not be drinking enough water in the middle of the night when I take it. Going to try to drink more with it.


Lapis- Thanks, going to try to keep up the mcp. So far I can only fit it in once a day.

Thanks Chicken.

Never heard of Chitosan. Is it OTC?


Is it even any use to use any binders if I believe I'm still living in a moldy environment. This is all making me so crazy. I wish I knew for sure.

I realized today, a year ago, I was dealing with a lot of pain, but basically still felt like myself. Then steriods, then never the same. Then found moldy AC. But I had been sleeping next to it for a while with mold in it ( but it was winter so not using it) until summer and things really got worse. Now not much pain, but constant brain fog, memory loss, can't learn, red eyes, ringing ears.

Now recently found the water damage in ceiling but it's been there for a long time. Also was a leak under my sink a couple years ago.

Maybe I've been herxing really bad? I feel like the center of my brain is numb and I can't think. So scared.

Feeling so lost and frustrated. I don't know what to do. I wish I had a car, I would try living in it. I don't know where to go.

a couple months ago I posted about how hopeless I felt. Still in the same state pretty much now.

Thanks everyone for your responses.