New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 205
   Posted 1/18/2018 4:29 PM (GMT -6)   
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.

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 1/18/2018 4:45 PM (GMT -6)   
I'm so very sorry. You seem to be overwhelmed by one heck of a lot of stuff. I hope I can give you some help.

Are you treating lyme in any way right now?

Dealing with lyme is a slow process. Nothing happens fast at all. It can take years to heal.

Your doctor is right about mold. It is everywhere. I am susceptible to mold. I can smell it in lawn that has had water sit on it without drainage. I can smell it when you rake the leaves or pine needles. I have to wear a mask whenever I disturb the yard. I can smell it in my girlfriend's bathroom.

Your hepa filters will help you a lot. I do know that my susceptibility to mold was more intense when I had lyme. Curing lyme and I can handle mold a lot better.

Maybe I am weird, but that's what worked for me. Treating the lyme and I wasn't as bad off.

I hope this works for you also.

It is hard when you don't have loved ones helping when you are sick. My close family knew when I told them I was sick, that it was really bad. I have never been sick. They all were concerned. However, I have a lot of other relatives that are in the medical field and they poo-poo'd the lyme diagnosis.

We can't pick our relatives, but I sure stayed away from those naysayers while I was sick. I needed positive from people.

Keep coming here for your social. So many of us find this is the place to really vent. No judging here.

Keep fighting the battle, you will win.

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 1/18/2018 4:49 PM (GMT -6)   
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
Regular Member


Date Joined Oct 2017
Total Posts : 205
   Posted 1/18/2018 7:37 PM (GMT -6)   
Thank you so much for responding to that mess, PeteZa. And thank you for trying to set my mind at ease here. I guess since I can't do much, and I'm alone, I really don't know what to do with myself while I heal. I'm hoping I can get to a certain point where I can start doing more normal things again. It's one thing to be sick but to be sick,scared and alone, whole other story.

I am treating lyme now. Since october. On a combo of omnicef 300mg twice a day and doxy 100 mg twice a day, ever since. Just saw my doc and he wants to keep me on it for 2 more months. I was really hoping he would switch it up at this point but I guess I have to trust that he knows better then I do at this point. Just seems like a long time to be on the same two.

Also been doing some Buhner herbs on my own but starting to think it might be too much for me. Everything seems to make me herx it seems. Been taking cat's claw, japanese knotweed, andrographis, Houttenya.

Was taking teasol and pinella burbur but ran out this month and won't be able to get more for a while. Same with the knotweed. So not really holding study with the herbs and still not sure what I'm doing and how to read my responses yet. There's just different levels of the cognitive stuff and some of the other symptoms.

Thanks for your tips about the mold. I'm not even sure if I smell any or not. Just know that there's obvious water damage, old house, mold in home tests, past exposure,etc.

I already received the air filter and have it running in the kitchen already.

I'll also look into the English Ivy Plant. I was never one for house plants but I think it's worth a shot having on around just in case. I just hope I remember to water it!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33837
   Posted 1/18/2018 8:29 PM (GMT -6)   
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.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2543
   Posted 1/18/2018 8:52 PM (GMT -6)   
Keep up with the binders (mcp/charcoal) and maybe try adding in food grade bentonite clay. These kinda cover a wide range of molds. Are you diffusing Theives?

If you can hang in there until the weather gets nice (what state?) maybe you can try sleeping outside. I wouldn’t take anything from the house. I think it would be telling if mold is your issue.

I thought this was a good story on mold:

www.oprah.com/inspiration/julie-rehmeyer-mold-and-chronic-fatigue-syndrome

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1996
   Posted 1/18/2018 9:48 PM (GMT -6)   
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)


Mister Mike
Regular Member


Date Joined May 2016
Total Posts : 331
   Posted 1/18/2018 10:38 PM (GMT -6)   
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.

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 205
   Posted 1/19/2018 3:00 PM (GMT -6)   
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.

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 205
   Posted 1/19/2018 3:35 PM (GMT -6)   
WalkingbyFaith said...
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.


Thank you Walkingby. Really appreciate it. Thanks for the prayers too. I really need them right now.

I'm not sure about the caseworker. I'll have to look into that. If I remember. My brain function is very bad right now. Simple things even to organize, phone calls, mail, I try and try and try and I can't get out of this fog long enough to think to do anything much at all.

I wish I at least knew I was in a safe enviroment and that my current LLMD would listen to me. I really fear what is going to become of me. I'll try to look into YMCA to use the sauna but already broke this month and I can't drive like this. SO have to use uber everytime I have a docs appt and it gets really expensive. I think I looked into a membership a few months ago and it was going to be still too much for me.

Plus, I heard not to use the public saunas, only IRS? Can anyone confirm this? SOmething to do with the chlorine they use in the water and breathing it in?

I was doing the nasal washes too but recently, I tried doing them again daily and was for a while but then all of a sudden, they started burning my sinuses too much everytime I tried. It really burned. I have no idea why. I was using the same salt packets and even got a new netti pot. Anyone know why this could be?

Like you said, I'm paralyzed in a state of inaction. I try and try but my brain won't cooperate at all. And I wear myself out. I'm losing more weight, not sleeping well and trying everything.

I pray too but it seems to fall on deaf ears for me. I don't know how much more I can take honestly. I do want to "check out" but I won't today and hopefully won't tomorrow either. I never believed in taking your own life but I have no life anymore. It's gone. I have nothing.

You're very fortunate to have your parents. I wish mine could help or someone around me could help me out of this. I really hope your situation improves as well. I'm so sorry for all you had to endure yourself.

Thanks again. <3

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 205
   Posted 1/19/2018 3:43 PM (GMT -6)   
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?

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 205
   Posted 1/20/2018 8:14 PM (GMT -6)   
Can someone help with a couple remaing questions above about sleeping in the enclosed porch? It might be a stupid question but I'm desperate and trying to look at all possibilities right now. My brain function (or lack thereof) is scaring the daylights out of me.


Also, best binder I can use right now? MCP, Clay or Charcoal?

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2543
   Posted 1/20/2018 8:55 PM (GMT -6)   
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.

Lapis_29
Veteran Member


Date Joined Sep 2017
Total Posts : 882
   Posted 1/20/2018 9:37 PM (GMT -6)   
Mergirl said...
Can someone help with a couple remaing questions above about sleeping in the enclosed porch? It might be a stupid question but I'm desperate and trying to look at all possibilities right now. My brain function (or lack thereof) is scaring the daylights out of me.


Also, best binder I can use right now? MCP, Clay or Charcoal?


mcp is best for mold, charcoal doesn't do much for mold

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 205
   Posted 1/20/2018 9:51 PM (GMT -6)   
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.

ChickenArise
Veteran Member


Date Joined Nov 2015
Total Posts : 1530
   Posted 1/20/2018 10:28 PM (GMT -6)   
Nascent iodine helped the thyroid issues that creeped in following my mold exposure. Works best if you can eliminate the Fluoride, Chlorine, and bromine.

Its a bit pricey at $30 per ounce but made a big difference after 3 months use. Earth Labs sells a 16 oz bottle for about $160 if you decide to add it permanently. I have but I am not taking nearly as much as when I was going through the worst of it.

K07 is right about the different binders. I am testing Chitosan right now but it will be a long time before I can tell how well a binder works.

2014 Mold Sick,2015 Clinical Lyme and co.,2016 Morgellons,2017 Remission
YT: ClintFromNYtoVA2
Twitter: @ClintFromNYtoVA
Blog: www.fascinatingtimetobealive.blogspot.com/
" The path to disappointment is paved with expectations "

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 205
   Posted 1/21/2018 6:59 PM (GMT -6)   
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.

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 205
   Posted 1/21/2018 7:01 PM (GMT -6)   
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?

Thoughts on this? I'll sleep out there in the cold ( after I've cleaned it out of course) but probably wouldn't do any good since I would still need to come into the kitchen and to use the shower, etc.

Just trying to figure out what to do. I'm so grateful for you all and this forum to ask this stuff.
New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, August 16, 2018 7:32 AM (GMT -6)
There are a total of 2,993,213 posts in 328,025 threads.
View Active Threads


Who's Online
This forum has 161221 registered members. Please welcome our newest member, HazelM.
249 Guest(s), 5 Registered Member(s) are currently online.  Details
HazelM, sebreg, SharonZ, LJohn23, fiddlecanoe