Jason: Introduction

[Jason]

Jason,

I saw your post in my thread and I only have a moment here but I've skimmed through your thread. I am really sorry you're dealing with all of this, I really am. Have you had any testing about the mold issue? I don't know about Michael Gray in Benson but I have heard of him and if I were you I would go see him. However, it is important to realize that in the mold doctor world there is reason to be cautious with the doctor's recommendations. So when i say I don't know Benson I mean I don't know what his approach is... However, see him he'll take you seriously and I think he takes insurance, Medicaid, etc -- which many mold specialists I've found do not take...

 

Also there is a woman with a blog and I know I've heard her mention Dr Gray. I think she lives in Colorado now. I'd post in her blog comments, be succint and ask for any recommendations. She knows your area of the country... Andrea Fabry is her name and I've read her blog which I've found helpful in some places though I do not know Andrea... moldrecovery.blogspot.com

 

It sounds like you have a lot going besides just mold too. Have you lost your appetite and can not eat? What kind of foods are you eating?

 

Take a good breath and remember you're going to get through this.

 

Good luck,

Alex

 

edit: Man, I am very very sad you've had to go through all of this. I've read some of your history and you are right, we do have a lot in common in many regards and that is unfortunate. I do think that you have been through so much that almost nobody is going to understand. It's got to be tough to talk to a therapist or someone else who literally doesn't understand the first thing you are trying to explain. Ive had that feeling where I've realized if Doc doesn't understand A and doesn't believe B how can he help me G, G is what I need solved. Jason, the first thing I'd do if I was in your shoes is test your mycotoxin levels and then get to work on rebuilding your health after that... I do think you're going to be okay so hang in there...

 

Thanks for the reply, Alex.

 

I have an appointment scheduled with another doctor who treats people for mold exposure. I spoke to their office on the phone yesterday. And, yes, they do accept my particular insurance. I don't know how good he is but it's a start at least. I don't think I could last a drive to Benson.

 

My biggest concerns are how to make it through work, now, though. I really think something is there. Work used to bring me relief during the middle of the day from this all, and then when I would go home to my stuff I'd get sick again. Now that I have moved and gotten rid of all my stuff (which technically still sits at my old room and is amazingly not harming the people whose place it is), it's the reverse, and work makes me feel ill. Again, I did sneak in on Sunday armed with ammonia (since I read that it can neutralize mycotoxins) and I cleaned my desk. I threw out virtually everything on my desk. Cleaned everything else with ammonia. I'm scared to go back, though.

 

Which makes me wonder just how capable I am to work. But if I don't work, what do I do? No one to live with support me, etc. I really don't know.

 

I will go to work tomorrow and see how it affects me. It really probably is a matter of getting toxins out of my body. I think it's just overloaded. For example, I used to be able to eat nuts without a problem. Now I cannot have peanuts as the mold that can be in peanuts made me severely ill one night. I can't explain just how toxic I felt. I know that I am not allergic to peanuts. It is just that I am likely full of so much in the way of volumes of mycotoxins that my body cannot process it all and I am therefore very sick. I may be a non-detoxifier. Maybe this doctor can test me for this.

 

Yes, I am going through a heck of a lot. And, it really is all thanks to psych drugs. I often wonder the kind of life I'd be leading now if my body wasn't all weak and messed up from psych drugs. That's the other funny aspect of this and I've mentioned it before - sometimes I will get strong enough windows (very rarely, though), in which I feel so strong that I don't feel "toxic" and I can withstand a lot more. It's even happened in these moldy environments, such as work and even in the room that actually had the mold in it. I am wondering, therefore, if a lot of this isn't a horrific extension of the affects of psych drugs and their withdrawal. No matter, I need a way to deal with the toxins that are likely inside me.

 

No worries about the PM. I really don't stay on these forums very much. I had been seeing progress. It is usually during times of deep distress and despair that I come here, because I really truthfully feel I have nowhere else to go for advice or information. My therapist? Yeah... she tells me to focus on other things no matter how I feel. That's really hard when the brain fog is so bad and the nervous system pains and toxic feelings are so severe that you wonder if you're going to be alive. That may be a bit dramatic but I think you know what I mean.

[Jason]

Do you know what I really miss from my time BEFORE meds (or rather, in-between meds, as this would be specifically from the year 2003, which was, for the most part, a relatively good year for me, a time in my life I was just off of Zoloft I believe it was at the time and before I had restarted SSRIs)? I miss that warm, comfy, "full" feeling I always had. Lights were brighter, I didn't feel like I was wasting away unnecessarily, I had relatively good, lifted, stable moods. I laughed a lot, enjoyed comedy, jokes. I "felt" good. Everything just felt... "full" around me. Just "fine." I don't have that anymore. I mean, I have had little brief windows that were similar, but now my body is slightly decomposed from all of this, so it just doesn't feel as good.

 

I'm considering making a profile seeking a sugar daddy to be able to afford to be alive. I am very sick and I need nurturing back to health. I barely have the money to work now, and now I'm scared to go to work because of the mycotoxins I've likely introduced to the environment there. I'm "cute" enough, I am usually told. I'm really not into older men but if they have money and would take care of me, why not?

 

This actually somewhat happened to me in 2008 and 2009, when I was on Effexor XR at 300 mg and just finishing up my benzo taper (by water titration, thank you, Gianna K, for posting instructions on how to do this on your blog, saved my life in 2008, it really really did). A dentist friend, about my age, was very interested in me, and helped me financially from time to time. Wanted me to move to Italy with him for a job. I was on the fence about going, but ultimately didn't want to because I really wasn't as attracted to him as he was to me and I also wanted to make it on my own. I wanted to be a sugar daddy, lol. I also didn't want to have to deal with tapering off Effexor XR in a foreign country. I didn't go. We stayed in touch for maybe a year and he would still periodically help me with a bill here and there but that is no more. He felt I was using him and maybe to a degree I was, I'll be honest. He no longer messages me. I haven't even bothered trying in years. He just no longer responds to emails. I have no phone number for him. I know that if he knew how ill I was now, he'd probably want to help me. But he doesn't know and can't know. There is no way to convey this to him.

 

Maybe I should create a Facebook just so that people can know how freaking ill I am? I hate Facebook with a passion, though. I don't like being internet searched, but, given all the crap I post on here and pp and other various sites, I guess I should just let all loose. Not like I'm going to be something someday anyway, like some important polititian or CEO or movie star or anything special or important like I at one time in my life thought I might.

 

But yeah, I miss the natural, warm "fuzzy" feeling life used to have before drugs. Even the air felt "thicker." Now everything is thin - the air, my body, my nerves, my emotions. Everything is out of whack and it's very very dark and negative. I really really miss that feeling. And I think it has to do with neuronal "branching." What I think happens during withdrawal is "pruning" or "trunking" of the nerves, so that they lose any kind of neuronal branching that takes place. Hence, pain, gloom, doom, bodily functions not working properly, etc.

 

I really am afraid to go to work tomorrow...

[Narcissus]

I can relate to things feeling "thinner", less rich somehow.  This is always the case for me when I'm in the midst of a wave.  I'm sure things will improve and life will gradually begin to seem "full" again.  

[Jason]

I can relate to things feeling "thinner", less rich somehow.  This is always the case for me when I'm in the midst of a wave.  I'm sure things will improve and life will gradually begin to seem "full" again.  

 

I see you were on Effexor as well. It was this drug that really changed my personality. I was so heavily drugged on this drug. I got this horrible dependence on it so badly that not only could I not forget a dose of it, but I could not miss my dose by more than an hour or so. When tapering down I had to even take it twice a day at 50% each dosing. Otherwise a full dose wouldn't last a whole day. It even got so bad that I took it four times a day at 25% each, when I was down on really little amounts, and that was with the generic. I had to switch BACK to the dang XR version and take it twice a day, and it would barely last the 12 hours. Sad days of my life, however not as sad as when I finally got off of it completely and got eventually burned by Prozac. That Effexor, it was so intoxicating to me. Unbelievable.

 

Right around my birthday (March 25) I had some good window moments, and felt "full." I even looked fuller. My then therapist at the time, and this is sad because it was the last appointment we had before she was horrifically murdered by her husband (so odd and out of the blue), she mentioned how well I looked, and even said, "you don't look undernourished at all" (we had really, really worked on keeping weight on me. No matter how much I ate and still try to eat, I still look like a shriveled up mass of an old man at the age of 31). She asked me what problems I had had besides my numb toes and I said "none. no symptoms." It's THAT that I'm talking about. Just the full-feeling, full-looking, REGULAR "feeling" you get to have as a healthy human being that I miss. That window didn't last long and actually about a week after that started the horrid downward spiral around Easter, when I got the worst cough and sore throat of my life and I find myself with this infection crap thing I am fighting today, likely due to the mold/mycotoxins. I did have a good birthday though. I felt so full. So alive.

[Jason]

I saw the doctor in Scottsdale and was not very impressed. First of all he said that insurance isn't going to cover this, that he never writes mold on anything. He doesn't want his license revoked. I understand. I wonder how to treat this, then. He said treatment would be like $10,000. Yeah, I have $1,400 to my name. Go me. I really did well in life...

 

Not to be discouraged, though. I called the doctor in Benson, AZ and will have to call back on Tuesday morning as the lady who answers the types of questions I have is on vacation.

 

I took 7.5 mg of clorazepate this morning, after the urging advice of my therapist. I have been in an anxiety downward spiral all week. I called a crisis line over suicidal thoughts middle of the week. I have not been to work all week, and they are aware what is going on. I'm going to try going back to work next week and urge them to have me sit in another location so that I'm not exposed to mycotoxins. I sure hope that they don't think I'm crazy, that they will accommodate me, and that I won't get sicker at work.

 

I need to find a way to get mycotoxins out of my system. Does anyone use specific over-the-counter toxin binders? I've read about activated charcoal, chlorella (sp?), and some others that I can't think of now. Cholestyramine is what I would ultimately want, but it's a prescription drug and if doctors can't treat me, how could I go about getting that, you know what I mean?

 

Crazy Scottsdale doctor did take blood though, so we'll see what that says. Oh I also went to an employment agency today to put my name in as actively seeking. I could get a $35,000 cable customer service job if I get a new copy of my social security card (lost it due to the mold move) and I interview well in their two-round interviews. Hopefully I can just go back to work (where I make more money and have a kinda cushier job than customer service) and be able to work and not inhale mycotoxins.

 

Gosh I know this all sounds crazy. It is a nightmare I can assure you.

 

Damn I feel good. I wish I could always feel this good, but without benzos. I hate that they make me feel functioning. I wonder if this is how people generally feel who don't have over-active nervous systems like I do.

 

To get neurotoxins out of my body, though. That I must figure out at some point.

 

That's all for now.

[alexjuice]

Hey Jason,

I sent you a PM, respond if you get it...

 

How did your blood test go?

 

As for binders... Cholystyramine is good but I don't think it's any better than some of the others and it has drawbacks. I experiment quite frequently with the binders. I find the best ones for me are clay (though the clays have aluminum which is toxic) and charcoal and also citrus pectin (pectasol) and then also try psyllium husks which work as a binder but have other benefits... I avoid the chlorella, chitosan, and seaweeds like modifilan because they feel like they are stealing too many nutrients... You'll need to experiment... I have posted about side benefits I've experienced from the clay and charcoal which includes reduced anxiety and improved sleep... I wonder if you will notice this as well...

 

Try melatonin,1 - 2mg for sleep which I take. Melatonin has a protective effect against a particular mold toxin. Also, how is your diet?  It probably needs an overhaul. I dump the fried foods as they seem to accelerate the problems to my vascular system. Same for nuts, avocados. I eat a lot of cooked vegetables.

 

I have used real time labs for urine mycotoxins... They are expensive and may or may not be covered by insurance... Though even if insurance covers you might have to pay upfront out of pocket, at least I do... I'd want to get one of these if you can afford it... After that it's not so important to keep up with this as it is expensive... IMO...

 

good luck,

Alex

[Jason]

Hey Jason,

I sent you a PM, respond if you get it...

 

How did your blood test go?

 

As for binders... Cholystyramine is good but I don't think it's any better than some of the others and it has drawbacks. I experiment quite frequently with the binders. I find the best ones for me are clay (though the clays have aluminum which is toxic) and charcoal and also citrus pectin (pectasol) and then also try psyllium husks which work as a binder but have other benefits... I avoid the chlorella, chitosan, and seaweeds like modifilan because they feel like they are stealing too many nutrients... You'll need to experiment... I have posted about side benefits I've experienced from the clay and charcoal which includes reduced anxiety and improved sleep... I wonder if you will notice this as well...

 

Try melatonin,1 - 2mg for sleep which I take. Melatonin has a protective effect against a particular mold toxin. Also, how is your diet?  It probably needs an overhaul. I dump the fried foods as they seem to accelerate the problems to my vascular system. Same for nuts, avocados. I eat a lot of cooked vegetables.

 

I have used real time labs for urine mycotoxins... They are expensive and may or may not be covered by insurance... Though even if insurance covers you might have to pay upfront out of pocket, at least I do... I'd want to get one of these if you can afford it... After that it's not so important to keep up with this as it is expensive... IMO...

 

good luck,

Alex

 

Thanks, Alex.

 

The crazy Scottsdale doctor's office called me today to let me know my bloodwork is in, and has "red flags." I reluctantly made an appointment tomorrow just to get the results. I told them I don't think they'll be able to treat me since I can only use insurance. He said they may be able to recommend supplements, etc and I can come in for the visit just to talk (will be my normal insurance copay for that). I'll be interested in seeing what it says.

 

I did get some chlorella but from Sprouts. They only had one brand so I got just that. I have tried only a little bit of it, haven't used enough and for long enough to notice a difference.

 

I went back to work and told them my situation, so they have me sitting at a different desk. The problem is it's in such close proximity to my old desk that I'm still getting reactions there. These are not mild reactions. Today, for example, I had a good morning at my desk and I felt like maybe I am going to be ok (I brought in some bleach water this morning, as I somehow successfully de-toxified some closet doors at the house I'm now living in using bleach water. I couldn't live with the closet doors as I would feel toxic and radiation from them, but after reading some things about neutralizing mycotoxins, I read that bleach with 5% sodium hydrochloride (or something, whatever, the active ingredient in bleach), is strong enough to denature trichothecene mycotoxins, but is BAD for actual living mold. So anyway, I took this to work today and doused my desk in it. I'm not sure if it worked for my desk or if my old desk or just the general vacinity is continuing to attack me). By attack I mean attack. All the nerves that were affected by Proazc, withdrawal, and B12 deficiency get VERY painful. My spine hurts, and cracks and clicks, my fingers hurt like crazy. I can't think. I feel like I am going to vomit. My muscles will feel like they're full of toxins. I actually thought I was going to pass out in the bathroomtoday. I feel afraid that I am going to die from mycotoxins/mycotoxicosis. Anyway, tomorrow I have to tell my boss that my desk is still making me sick and that I don't know what to do. I feel crazy because no one else at work is having this problem. You can't see whatever it is that's effecting me. You can't even smell it (well, I kinda can). I don't know how I got my closet doors to be detoxified, but I don't know how to solve this problem at work. I even got some essential oils and made my own batch of thieves oil that I want to try diffusing at the office while no one is there, just in case there is still living mold there somewhere. I just can't believe this is happening to me. I just hope work will work with me and somehow I'll be able to go to work and just work, without sitting and suffering silently in pain. I ran into my director of the entire department and an assistant director on my way as I was going to try sneaking in this evening to clean and test objects, and they asked why I was there. I told them all about what is going on and they said not to worry, that they'll figure it out with my boss. I told them they are very optimisstic and that I am the opposite. I see no way out of this. I see no solution. They said that it will work out. I really hope it will.

 

I don't know what else to do about this. Pray?

 

Alex - what kind of mold symptoms did you have? Did you cross-contaminate anything and if so, did you get a high, "radiation" type feeling being near things that were contaminated. It's a sign of mycotoxicosis I've read. My body feels like it's being poisened when I get into one of these situations, and it's not pretty. I also read that you can indeed die from it left untreated.

 

Alex I know you rely on your father somewhat for money and feel bad for doing that since you don't have the healthiest of relationships, but I am here to tell you that you are SO LUCKY to have him do that for you. Honestly. I feel I can't do anything due to no finances available. Heck now my work is making me have these horrific reactions? How to work and get well if I'm so ill at work, and then to pay for treatments which things won't cover because "mold doesn't do this to people" blah blah blah says the government and others, etc. It all makes me want to give up and just live on the streets, where at least I won't get mold hits because I'll be out in fresh air. But then I'll likely die of starvation and heat exhaustion (I live in Phoenix).

 

So that's my update for now. Have no idea what's going on with my body and it's scaring me to death. I don't know how to fix it. Losing hope again.

[alexjuice]

I recommend buying the activated charcoal and a clay if you can afford it -- google living clay which is good. Jason, I think you're going to have some really rough times but you can get through it, I believe. You sound moldy, yes. I'm sorry to hear how badly things are going...

 

I feel 'radiation' somewhat in the sense that my skin on my face will burn when i am in a moldy place, like where I was receently in maine for which I had to flee. I try not to panic but, honestly, my sense is that it's best to just leave those environments if possible. I think that will be harder for work space.

 

More often though my worst symptoms are joint/bone. It feels like I am getting pelted in the knuckles and bottoms of my feet and also my jaw with little bullets. My fingers are curled in a bit at the knuckles and some of fingers display very noticeable bone loss. I also get twitches in my eye and a drooping eyelid...

 

I believe my worst problem are secondary mold problems. Ochratoxin is a potent immunotoxin and my immune system is impaired right now. I am losing tons of weight, if you've seen I put pictures up a while back, and I believe that a major parasite such as a helminth like a tape worm or round worm which has grown out of control due to my weakened immune system... I don't know exactly, I am always formulating my own theories. I have had a chance to read about this and also talk with a number of doctors over the last year and there really are no experts, or nobody who really seems to get good grades from the patients so to speak... I am shocked to find how often I know more than my own doctor who is the only mold literate doctor in the capital city of a huge state!

 

I have been lucky in some ways. Of course I do not feel particularly lucky but fortune -- and misfortune -- is a relative thing for sure... If you get a mycotoxin urine screen you may discover which particular toxins are elevated in your case. I found that the choly was pretty effective for the tricothecenes -- before I re-exposed myself -- more than the ochratoxin. However there are a lot of interesting self-treatments for ochratoxin and they are DIY and more affordable than the doctors who don't take ins ... http://www.hindawi.com/journals/jeph/2012/835059/

 

Hang in there man

[Jason]

I sometimes wonder why the other main antidepressant support forum even exists, since when you post there about your problems they are quick to say that they are "all in your head."

 

I have learned that serotonin and SSRIs have been found to have some anti-fungal properties, which is why I'm wondering if I'm having such a hard time fighting off molds. I cannot eat for example a fast food meal full of sugars and processed foods and carbohydrates wihtout getting hit with symptoms. I have crap oozing out of my skin and scalp that is brownish-yellowish in nature. My moods and nerves are severely affected. Short-term memory, too. But, somehow, according to the moderator on the other thread this is all in my head. Love it.

 

Even if it were so that these sensations are all in my head there is very little I can do about it, since the chemicals in my head have become so super imbalanced due to psych meds. There just isn't any winning for me.

[Jason]

Well, this is going to have to be my only support forum with regards to antidepressants. I can no longer tolerate being labeled with health anxiety on pp. Something I know and have known that I do not have. Please don't label or judge me here. Or else I will have no where else to go for the support about whatever is going on with my mind and body due to these drugs. I am sick, and doctors cannot help me. I went to the only place that could help me, and no one ever told me that it could be this bad coming off meds. So when I list my symptoms they all just label me as having something I do not have. Excuse me. I know my own body.

 

Alexejice would not survive one day on that site. They'd eat him alive like vultures about all the poor things he's having to go through, and just tell him that he's nuts. When in fact he isn't. He's very sick as a result of using antidepressants.

 

What a shame. It used to he a very helpful forum.

 

Jason

[Petunia]

Welcome back Jason,  I'm sorry you haven't been able to get the support you need, no one deserves to be judged and labelled by others, just because they are having a different experience.

 

There is a saying I like "Don't go to a hardware store for milk"

 

What is your situation now?  Are you still able to work?

 

Petu.

[Jason]

Welcome back Jason,  I'm sorry you haven't been able to get the support you need, no one deserves to be judged and labelled by others, just because they are having a different experience.

 

There is a saying I like "Don't go to a hardware store for milk"

 

What is your situation now?  Are you still able to work?

 

Petu.

Hello,

 

Thank you. Yes, I am able to work. I had to quit my old job in the summer as I dragged mycotoxins to work that were making me very ill there. I got another job and am even looking for higher paying work too. My main concerns of late still revolve around mold-related symptoms and nervous system weakness and irritation. I am very sensitive to different air environments, scents, smells, foods, textiles, chemicals, soaps, but not severely. Sometimes things can be severe, though. Today, for example, I was in a fairly good mood, then ate a chicken salad sandwich on wheat bread. Shortly after it I felt very ill with a headache and a severely depressed mood. It slowlly lifted as time passed and I digested the sandwich. Not all food are like this and not all reacitons are the same. But that is where I am in this journey right now. I have corresponded with another SSRI suffer who has healed over several years that this food sensitivity is normal and is not deadly.

 

I try to just get by each day with what I can handle. Some days I can handle more. Some days I have no reactions to food or environmental factors like scents or air qualities. Other days I can't tolerate these things as easily and am more sensitive.

 

I recently diffused thieves oil in the house I'm living in with my friends. It did kill a lot of fungus but released some mycotoxins in the air I can feel it. So I've been tidying that up as best I can with products I've found that help mycotoxins. I also take a supplement that has thieves oil in it and it seems to help!

 

See - little things I can to do try to help, right?

 

I know these things may sound off-the-wall but they are what I have to deal with now. Just the way it is. Oh, and most of my mold-related symptoms effect my nervous system, and it is no wonder, as I'm sure that is what is trying to heal the most in me now.

 

Thanks for the support. I don't like to post a lot on these support forums, but when I do need it, I just need kind words, some re-affirmation that what I'm going through has happened to some other people in some sort of fashion. I know we don't all have 100% the same symptoms, but there are similarities and commonalities. And when I do need the support, I really need it. I onlly resort to the online forums when I am feel really really bad. Otherwise I just try to carry on with life as best I can and enjoy where and when I can.

 

Thanks, all. So good to be here. What we have is a medical phenomena. It really, really is.

[Petunia]

You sound like you are doing really well Jason. I relate to some of the symptoms you wrote about and the fact that sometimes the reaction is bad, but that at other times its hardly noticeable.

 

I'm also sensitive to different air environments, scents, smells, foods, textiles, chemicals, soaps etc.  Just lately, I've noticed that sometimes, about 20 minutes after eating anything, I will get heart palps and temperature fluctuations.  I will 'taste' strong chemical smells for several hours after being exposed to them.

 

I think that anything you can do which helps and makes you feel more comfortable is good, it doesn't matter how it works, as long as it works and doesn't hurt anyone else.

 

[Altostrata]

Tea tree oil is good for killing fungus. Smells terrible, though.

[Jason]

Tea tree oil is good for killing fungus. Smells terrible, though.

 

Yes - I just ordered some to use for general cleaning. It smells strong!

[Jason]

I am not feeling well and I never do. My body is physically deteriorating and I just can't believe this is happening to me. It is almost three years since I took Effexor XR and I know it was that drug that damaged me. Why did I ever get out in that drug I have no idea. I certainly didn't need it. What hurts me the most is I knew I was addicted on it and I knew these drugs are bad for you, so I try to better myself by getting off of them all and now all I do is suffer. And I can't go back on them because they are the reason I am like this in the first place plus I can't take them anymore Prozac which I took to get off the Effexor almost killed me due to suicidal thoughts.

 

Why ? I can't keep feeling all this physical pain it is torture on my body. I can't eat any foods without feeling awful. My body looks like I don't eat or it looks worse than people who are HIV positive or have full blown aids or cancer. I look like Steve jobs before he died I swear. All because I needed to get off the drugs that got me so sick. It's not fair I want my damn life back and I really need some support everyone. Please someone reply to me

[mammaP]

Oh Jason I am so sorry that you are feeling so sick. I've been reading through

your thread and it is terrible what you are suffering. 

It will get better, I am certain of that, it is so very hard to keep going but one day

you will realise that you are feeling better, look back and wonder how you got through.

And you WILL get through because you are stronger than you think.  You are doing a 

great job of looking after yourself and researching what steps to take to improve things.

Hang in there! 

[Jason]

Oh Jason I am so sorry that you are feeling so sick. I've been reading through

your thread and it is terrible what you are suffering. 

It will get better, I am certain of that, it is so very hard to keep going but one day

you will realise that you are feeling better, look back and wonder how you got through.

And you WILL get through because you are stronger than you think.  You are doing a 

great job of looking after yourself and researching what steps to take to improve things.

Hang in there! 

Thanks mammaP I need to go back through my thread too and re-read it.

 

I'm crying because how destroyed I am because of these drugs. I have no solid relationships anymore. I depend on a friend and if he ever left I don't know what I'd do. I have no family, really. They don't know or understand what's going on with me and are very far away. How did this become my life? I mean I didn't ask to be filthy rich. I just wanted my own place, significant other maybe kids maybe not, some sense of stability. I can't date or make new friends. I am always crazy. I have next to nothing of my own. I'm always sick. I am just not who I used to be at all. And I don't know if that will ever change back. It's because of these drugs. They robbed me of everything I was and had.

[Petunia]

I'm sorry you are having a difficult time again Jason. I agree that what these drugs can do to some of us is criminal, something which has been sold to us as a 'cure', ends up ruining whole lives as we struggle to recover and put back together what remains of our pieces.

 

I think that half of the recovery process is coming to terms with what has actually happened to us and being able to frame it in a way we can live with.

 

 I can't eat any foods without feeling awful. My body looks like I don't eat ....

 

I'm hesitant to suggest this, because I've only been trying it for 4 days and I generally don't randomly recommend things to other people just because its something I'm doing, but in your situation, it might possibly help and I don't think it would make things worse.

 

I'm not having problems with eating like you are, but sometimes I do get an increase of symptoms after I eat.  But that's not the reason I'm trying this.

 

I've started drinking one serving of stage 1 infant formula in the mornings, for the nutritional benefits of it.  Its very easy to digest, nutritionally rich and it doesn't contain some of the 'bad' things which are in the adult formula Ensure.  It doesn't taste the best, I add a little bit of chocolate powder.

 

Maybe you could give it a try.

 

I hope you start to feel better soon.

[alexjuice]

Jason-

I know what you are saying. You've been through a ton and you're not out of it yet and, on top of it all, almost nobody is able to support you or help you! It takes extraordinary perserverance and will to live to survive this but I believe you can do it! Life won't be like today tomorrow, things change and they will for you too. I've been ill for years but I know there were better times and even good times now and then and this is the same for you too, I think.

[Jason]

Thank you all for your kind words and advice in your responses. It really helps me and supports me. You are all so wonderful.

[Jason]

I am 2 years off all serotonergic agents today. February 20, 2012.

[Jason]

Making an update... please someone help me sort this out...

 

Is anyone else extremely sensitive to basically everything? I have mold hypersensitivity now. Super hyper sensitive. It makes me depressed/anxious/etc. Here's what happened tonight -  I was driving in my car during what I would call a small window, I turned on my car's AC system (which car AC systems are notorious for harboring mold), and it blew my nervous system's peace and tranquility to bits. I was in hyper panic mode. I couldn't think. I thought I was going to crash into cars. My right eye started to get very blurry and a film developed over it. My skin on my hands was crawling and I had a super urge to flee. I turned off the AC and rolled my windows down and started to slowly feel better. Tried it again with the AC on, bam! anxiety on steroids.

 

Now, riddle me this... a few days ago I entered a very very strong window from withdrawal, and I felt super "normal." (You all know this feeling for those of you who get windows.) I was able to tolerate very cold blasts from my car's AC that day.

 

So, what I'm gathering is... it's not all "mold illness." It's not all "withdrawal." It's some combination of the two for me. I have a weakened nervous system from psych drugs and vitamin B12 deficiency that I had a couple years ago. .The withdrawal has sent my nervous system into depression and anxiety spells that are on steroids compared to most people. I have always had a sensitive nervous system, but now it is super sensitive due to these factors. Mold is in and of itself neurotoxic. Most people can handle this because they have strong nervous systems, but when given too much over a period of time, anyone can get sick to some degree. Since I was involved in a lot of it, and since it is so neurotoxic, my nervous system is on complete edge when it is in a wave of withdrawal, so much that it will send me to a panic beyond belief (or depression, etc.)  So, these "over reactions" in theory should at some point in time go away, or at least become much more manageable when my nervous system further heals and I have more normal windows rather than waves. At least I'm hoping... Because I mean, if I could tolerate the AC relatlively well just a few days ago, when I was in a much stronger window than I was in today, there's gotta be hope? All of this will hopefully iron and smooth out? Less swinging?

[Jason]

Making an update... please someone help me sort this out...

 

Is anyone else extremely sensitive to basically everything? I have mold hypersensitivity now. Super hyper sensitive. It makes me depressed/anxious/etc. Here's what happened tonight -  I was driving in my car during what I would call a small window, I turned on my car's AC system (which car AC systems are notorious for harboring mold), and it blew my nervous system's peace and tranquility to bits. I was in hyper panic mode. I couldn't think. I thought I was going to crash into cars. My right eye started to get very blurry and a film developed over it. My skin on my hands was crawling and I had a super urge to flee. I turned off the AC and rolled my windows down and started to slowly feel better. Tried it again with the AC on, bam! anxiety on steroids.

 

Now, riddle me this... a few days ago I entered a very very strong window from withdrawal, and I felt super "normal." (You all know this feeling for those of you who get windows.) I was able to tolerate very cold blasts from my car's AC that day.

 

So, what I'm gathering is... it's not all "mold illness." It's not all "withdrawal." It's some combination of the two for me. I have a weakened nervous system from psych drugs and vitamin B12 deficiency that I had a couple years ago. .The withdrawal has sent my nervous system into depression and anxiety spells that are on steroids compared to most people. I have always had a sensitive nervous system, but now it is super sensitive due to these factors. Mold is in and of itself neurotoxic. Most people can handle this because they have strong nervous systems, but when given too much over a period of time, anyone can get sick to some degree. Since I was involved in a lot of it, and since it is so neurotoxic, my nervous system is on complete edge when it is in a wave of withdrawal, so much that it will send me to a panic beyond belief (or depression, etc.)  So, these "over reactions" in theory should at some point in time go away, or at least become much more manageable when my nervous system further heals and I have more normal windows rather than waves. At least I'm hoping... Because I mean, if I could tolerate the AC relatlively well just a few days ago, when I was in a much stronger window than I was in today, there's gotta be hope? All of this will hopefully iron and smooth out? Less swinging?

Sigh... please pardon my bad grammar, use of English, lack of good sentence-structure and word choice, all.  Moldy brain and withdrawal-stricken (?) brain here... sigh please, God, fix me!!!

[Petunia]

Hi Jason,

I can hear the frustration and confusion in your words and I empathize and understand completely, I've been going through a similar process. Same patterns, different details.  I've only just starting getting some real windows of feeling close to normal though, but its been driving me nuts, trying to understand why sometimes, doing certain things makes me feel very ill, but other times, I just feel uncomfortable.

 

I guess its just the windows and waves nature of this process.

 

But I did want to comment on something which is similar for me, and until I just read your post, I didn't understand what was going on.  Since my CNS crashed at the end of 2011, I've had an intermittent symptom of getting a feeling like there is something struck in my throat ,  I would have to keep coughing to dislodge it, but there is never anything there.  One of the things which would always set it off was getting in my car and driving anywhere.  I couldn't figure out if it was an allergic reaction to the vinyl or something to do with the air.  Its been getting better over time though.

 

You are having some good windows, so this is hopeful, I think in time, you will make a full recovery.  Keep taking care of yourself.

 

Petu.

[Jason]

Hi, Petu. Thanks for sharing. So, you find yourself suffering similar patterns? My windows are so short, though. Few hours, and they are "incomplete." Early in withdrawal I had stronger windows that would last longer. I now realize that at the time I still was feeling whatever small positive effects were left from the antidepressants, so there was probably more serotoin at the time to facilitate stronger windows. This has been coined a "honeymoon" period, where you are no longer on the drug and feel somewhat better, maybe even "normal." But it's just a facade.

 

Have you ever figured out what was causing the lump in the throat feeling? Also, I am on the mobile version of the site now and cannot see your signature. Can you tell me how long you've been off now?

 

Is anyone else besides me suffering from fungal/mold reactions? Besides alexejice? I've corresponded with another sufferer and she said fungal issues are common after ssris. In fact, I'm wondering if what a lot of us are suffering from is not an issue with overreactions to natural and other environmental commonalities such as fungus, chemicals, etc. I believe serotonin acts as a shield or barrier to how our bodies handle these things. Same thing with stress in general. Fungus is a natural neuro stressor. Without sufficient amounts of neurotransmitters, and without them being in the right proportions, the body suffers immensely as its defenses are down. In fact, perhaps all my life all my anxiety stemmed from noticing these reactions in my body and freaking out about them due to fluctuations in these neurotransmitters. I don't know. All I have are ideas and theories. I will tell you one thing, though, that I notice. When in a window that is strong enough, I can honestly feel stuff in me "die off" and I feel a sense of relief. Serotonin itself kills fungus. It's just a shame my levels can't stay nice and high in the right proportions so I can just get back on with my life.

[alexjuice]

I have thought that it's possible that toxicity plays a part in general w/d. See this post

http://survivingantidepressants.org/index.php?/topic/5673-hypersensitivity-improved-after-move/

 

I would guess that with the benzos in particular that volatile organic compounds like mycotoxins are inhibited from release so when a person stops the drug then all the toxins come forth way too fast and these are neurotoxic and this could explain part or all of the origin of certain cases of w/d. The evidence suggests these toxins are sequestered in the GB/liver and GB function is inhibited by sedatives like benzos.

 

For SSRIs, yea I think something similar is possible or that some mechanism of toxin release is contributing though I don't know what it would be because I am not sure if the GB/liver connection is as valid with the SSRIs.

 

On the other hand, it also seems possible that a basic neurological sensitivity can cause a lot of the symptoms. I find some neurological symptoms like the really strong hyperaleting symptoms are from a deranged nervous system. Is it deranged from damage from nerve toxins like fungal metabolites? Possibly. I have reacted to many things where it feels straight up electrical though and I dunno. Wish I did, instead I am suffering worst as ever.

[Jason]

Thanks for that link, Alexejice. I absolutely know that environment influences how my nervous system feels. I've become so super hypersensitive, though, that even the slightest bit of mold and my nervous system goes haywire. These reactions are either completely gone in a full window from withdrawal, or are hardly bothersome, similar to Petu's symptom complaints. That is interesting about the exact why's of this, and what our drugs or the state in which our systems were left because of these drugs play into it. I wouldn't be surprised if we no longer detoxify at normal rates.

 

I have a job offer for a place that can offer me more money that I have to ultimately decline, because the building had me reacting so strongly I felt I needed to flee during the interview. Ridiculous. And of course no doctor can treat this. I got a call from Mayo clinic themselves telling me they don't treat mold infections. And I cancelled my appointment with dr gray because I simply cannot afford treatment, not that it would help me much anyway( again, my evidence is just how differently I feel in a positive direction during a window that points this away from mold itself and towards my own weak nervous system as to blame. Mold is simply the method to my nervous system's madness)

[Petunia]

On the other hand, it also seems possible that a basic neurological sensitivity can cause a lot of the symptoms. I find some neurological symptoms like the really strong hyperaleting symptoms are from a deranged nervous system.

 

This theory makes most sense to me because of my own experience. When the body is in a hyper alert fight/flight state (a wave), all its energy resources are going towards basic survival systems, so other non-essential systems don't work properly.

 

I think the reason you would have been very symptomatic while in the job interview is because its an anxiety provoking situation, your already overloaded nervous system would have been even more stressed and every trigger in the environment would have been magnified.

 

I'm not sure what's causing the problem with my throat, I don't really get it in the car any more, but I do still get it after eating sometimes, its very random though.  My main environmental triggers are sound, temperature changes, caffeine, sugar, social interaction, bright lights, fluorescent lights, and airborne chemicals. Waking from sleep and physical exertion bring on symptoms too. I also get increased symptoms whenever I'm exposed to anything which arouses strong emotion.

 

I've been off SSRIs since 2010, after being on them for about 13 years, but have taken other meds since.  Been completely medication free since May 2013.

 

 

I absolutely know that environment influences how my nervous system feels. I've become so super hypersensitive, though, that even the slightest bit of mold and my nervous system goes haywire. These reactions are either completely gone in a full window from withdrawal, or are hardly bothersome, similar to Petu's symptom complaints.

 

... and the state of our nervous system influences how we process environmental factors.  I believe that if we focus on healing the nervous system, then everything else will flow on and heal naturally from there.  Of course avoiding our particular environmental triggers would play a big part in healing the NS.

[Jason]

I found that niacinamide has been studied for its potent antifungal properties. Out of curiosity, I read that niacin is a nervous system vitamin helpful in psychiatric and nervous system function and repair. I tried some last night and wow did a lot of my symptoms go away. This morning I felt awfully sick, and I know this pattern well. When I learned of my B12 deficiency, I had extreme marked swinging in improvement and despair of symptoms when the vitamin washed out of my system. I'm thinking that my being so I'll lately has been a result of not just fungus, but niacin deficiency. In any event, I am going to keep taking this daily. It's the niacinamide form at 500mg (the lowest dose I could find available to buy from a store last night). My concerns:

 

1. The "swinging" feeling of good/bad symptoms

2. Liver toxicity. I read that niacin, especially the niacinamide form, can be toxic to the liver. Should I worry at 500 mg? Is this dose worth calling a doctor and getting liver tests done?

3. I am now on a pretty hefty regimen of vitamin supplementation. I take all of the following now:

 

Multivitamin as insurance

B12 5000 mcgs for B12 deficiency (mostly fully healed now of the symptoms)

Biotin 1000 Mcgs for it's intestinal fungal properties and for healthy hair and nails

Niacinamide for fungus and the strange array of neurological symptoms I had been experiencing in the last few months that have dramatically vanished once on the niacin

Vitamin C 2000 mgs for immune support

Vitamin D 5000 IU for deficiency now largely reversed

Fish oil - just a cheap brand that is low dose but does the job

Probiotic - another cheap brand but of the acidophilus variety for candida overgrowth

 

Is this too much? lol

 

Why am I having so many problems with getting B vitamins into my system? Should I consider a B complex or just take the Bs above? I have had folate and thiamin checked in my past and both are normal.

[Rhiannon]

Jason, most of us don't do well with B vitamins in withdrawal, especially in high doses. If you're going to try them, you might want to go with a much smaller dose at first, then if you tolerate that well, titrate up.

 

I have multiple chemical sensitivities, which for some people is initially triggered by mold exposures and then spreads to other chemicals. There appears to be a tight connection between the alerting type flight or fight hormones and excitatory neurotransmitters and those reactions to chemicals, via the limbic system. For me what has been helpful has been something called limbic retraining, but it's difficult to do when you're in active out of control withdrawal.

 

Sometimes it can be helpful to focus on external causes for our symptoms, but it can also become actually more damaging than it is helpful. You have to find a sort of middle road between accepting the symptoms and fighting them. Taking the "I'm going to fight this" approach too much can actually keep the fight-or-flight excitatory systems in overload, when what we really need to do in withdrawal is learn to calm them. We can actually develop habits that can help calm the limbic system even in the face of withdrawal.

 

So I would suggest that along with whatever else you do, you might want to experiment with some mindfulness meditation and slow, gentle, conscious walking in a quiet, soothing natural environment.  It can't hurt, and it might help. Gia's posts and website (Beyond Meds) has a ton of information on mindfulness type stuff, surrender to the moment, that sort of thing. It may sound like giving up, but it's not; it can actually help balance and calm and reduce symptoms, both of withdrawal and of environmental sensitivities.

[Altostrata]

How long have you been taking the B12?

 

It's not too much, just be mindful that you might have a bad reaction to a supplement and go cautiously, as Rhi suggested.

[Jason]

How long have you been taking the B12?

 

It's not too much, just be mindful that you might have a bad reaction to a supplement and go cautiously, as Rhi suggested.

 

Been taking B12 for about 2 years now.

 

OK, guys, I am VERY upset right now. I don't know what these f-ing drugs did to my body, but I'm mad as hell now. My body needs niacin supplementation, I have discovered, in my taking niacinamide. After I take it, I am calm, a lot of my bizarre symptoms go away, and I feel pretty normal. It wears off after a few hours, and I'm plunged into a state of what feels like a niacinamide "withdrawal." (This happened to me when starting B12, too.) I looked up niacin deficiency, trying like hell to figure out why in the hell or how in the hell I could have something like this in the US in 2014. Granted, my diet is pretty crap much of the time (fast food, etc), but I take a multivitamin, lots of other vitamins, I do eat enough healthy meals as well during the week (my roommates only shop at Whole Foods and cook nuturious meals for me, etc, that I chip in for as part of living here). WHY IN THE HELL AM I HAVING SYMPTOMS OF A NIACIN DEFICIENCY, THAT I HAVE NEVER HAD BEFORE?!?!?

 

What the hell did these drugs do to my body? Or did I develop some sort of tryptophan malabsorption after taking years of those stupid proton pump inhibitors? Why in the hell was any/none of this ever explained to me? How can PPIs be over the counter?

 

I am so mad as hell, because if I tried to go to a doctor and ask them any of these questions, they'd just insist I go on an antidepressant, 90% guaranteed. As far as fixing my health, I'm clearly f----ed.

[Jason]

No wonder I've been so damn sick lately. I've lost even MORE weight that I can't afford to lose. My thinking has been very disorganized. I have been having strange nerve symptoms. I get dizzy. I know a lot of this can be withdrawal, but why would taking a 500mg capsule of niacinamide clear all this crap up, at least for a few hours, then I plunge into the deepest sickness I've felt since I was practically bedridden and on a near death-bed from vitamin B12 deficiency? What the hell is going on with my digestion or lack thereof?! No wonder I've been so damned depressed for several years. Can I ever expect to lead a normal freaking life, if I can't even get nutrients from food like a normal person? What the hell is going on with me?!?!

[Jason]

Well I think the end is near. I am so weak and dizzy and confused as I type this.

 

I think I have serious vitamin B deficiencies. Went to work today only to make up I have tons of pain and can't work just to turn around and come home. Feel all wilted, nervous system so weak. Shoes barely fit me keep falling off. Can't think. Surroundings feel unfamiliar. Stopped at a Walgreens and managed to buy a cheap Nature Made B complex that has low b vitamins but higher than my multivitamin has. I have zero appetite I feel like I'm gonna puke. I feel all furry like I'm full of mold in my forehead, hands, and feet. I think I have beri beri it was hard to walk in the Walgreens and it's hard to type this here my hands are freezing cold.

 

I think mold is kiling me or I don't know. I odn't know wha tht f--- is wrong with me anymore and I certainly don't know how to fix it anymore if it can even be fixed. What's funny is yesterday afterenoon I felt normal but I had taken that high dose niacinamide. I can't keep swinging on that stuff though I don't know what to do anymore I hope I just die in my bed today I'm so sick of this life is no longer for me I can't even function anymore I'm so done I did a lot in my 32 years on this planet I lived a full enough life just take me now I cna't anymore

[Jason]

So I went to a new doctor today. Why do all doctors care about your damn history more than the present conditions? Again, suggested I take Lexapro, 10mg, I could even cut it in half or quarters he said. No thanks, I'm not taking that I said. Oh, and the niacinamide? I'm not supposed to feel it so it was just placebo affect. Really? Do these doctors realize just how stupid they sound saying these things? Pathetic. The only good thing I learned from him is that it's safe to take niacinamide in the ranges I'm taking daily without worrying about my liver, which I already suspected anyway. I guess I'll just have to live with the constant dizziness, mold-like feelings sensations, smells, headaches, bloody noses, nereve problems, walking problems, etc. since there's clearly nothing wrong with me. It really makes me not want to live in this world any longer if this is how this world really operates.