- Messages
- 18
- Location
- Connecticut
After years of feeling terrible and not getting any answers from my doctors, I've recently decided to embark on a solo effort to get my health back, based on a functional model. I've been sick since I was a kid, with various things, mostly inflammatory in nature. Here is a timeline:
Childhood: (from around age 6-10)
Developed serious asthma (hospitalized on several occasions) + allergies
Chronic UTIs- structural issues ruled out
Insomnia, depression and anxiety
High School:
Childhood issues persisted while CFS type symptoms developed
Weight gain, hair loss, severe acne, ADD symptoms appear
Diagnosed with Hashi's, aged 16 (to this day still take desiccated thyroid)
Remission of some symptoms achieved after beginning thyroid treatment
College:
IC diagnosed and I had to drop out of school
Lyme diagnosed and I was treated with IV abx 2x daily for 6 months
Post College:
Full remission of ALL symptoms except IC after Lyme treatment-for 2 years.
(Keep in mind, my doc gave me EVERY medicine and supplement + dietary modification under the sun so it's hard to know what worked + why!)
Late 20's:
Weight gain, acne, hair loss, anxiety, insomnia + UTIs return
Asthma (which had been less of an issue) returns
Start getting hives with food
Early 30's:
Full blown histamine intolerance (two scratch tests negative for real food allergies)
low blood pressure
'Meniere's' type symptoms
phelgmy back of the throat in morning
drug + supplement intolerance
pins and needles, fasiculations
RA type symptoms in finger + tailbone
memory/cognition issues
brain fog
panic attacks-briefly
tests came back positive for EB
My question is this: I had been doing a bit better when I decided to move to NYC. I moved into an old prewar building without central air, only dusty window units. There was no fan in my bathroom but I mostly tried to keep the window open after showering. There was a guy upstairs who was crazy and there were leaks in every room of my apt at some point. Management did very little to curb his behavior. By the time I was itching to leave (literally itching) the leaks had reached my bedroom and my ceiling basically a hole in it. All this dust/water came through and management sent people to repair it.
Luckily, I was so frustrated with the whole situation that wasn't spending much time there by that point. I had basically informally moved back in with my family in Connecticut.
But my question is, do you think mold could have caused the histamine intolerance?
When I moved in, there had already been one leak. But it was in the back room, that I spent almost no time in.
Roughly about 5 months after moving in, I have having a lot of hives with food.
HOWEVER, it that period of time, I was doing a lot of other things that likely contributed to histamine issues like drinking a fermented kefir soda drink very often (because it helped my bladder) and taking Benadryl and Advil PM every night to help me sleep. I now know that too many NSAIDs can cause hives and perforate the gut.
I then went to a acupuncturist/NAET specialist and the hives went away. I had great skin for a while and then did something absolutely stupid. As a birthday present to myself, I went and got fillers in my face. I thought it would be ok as my skin had been clear, probably for over a year.
But a month of so after getting the fillers, the hives came back. And not only did they come on with food, they were there all of the time, like big inflamed plaques. I could barely eat anything, let alone leave the house.
I have been struggling with the skin stuff since then. All normal allergies have been ruled out through back patch tests, biopsies, etc. My skin allergy derm (who is wonderful) is still mystified.
Throughout this time, I was also dealing with a blackish strip on the grouting in my shower. I was a scared of it and in denial and so honestly, it just stayed there for a long, long, long time.
Very slowly over time, its also occurred to me that my asthma has slowly gotten worse again. It had been pretty under control for a good long while. At the time mold didn't occur to me and I just chocked it up to city life, especially in the humid summers. I realized that I also had a minor infection in the back of my throat that would produce phlegm upon waking but would calm down for the rest of the day. I still have this- its been a few years, off and on.
The third, and by far dumbest thing I did living in New York was to one day eat half of a pot brownie- from someone I didn't know very well.
Of course I had a terrible, scary reaction and had to go the hospital. They gave me Ativan, laughed at me (it was a slow day in ER and I was happy to entertain I guess?) and sent me home.
But my brain has never been the same since. I've listed all the symptoms above and won't get into them again here as this has already turned into the 'War and Peace' of health chronicles.
I'm bringing up everything in detail here because on the surface, you could look at my story and say "Here's someone who moved to a dirty, exhausting city when she was still immunocompromised and made a few bad choices. And now she's sick."
Obviously my health issues go way back BEFORE I was exposed to that apartment. So you might say, for example, that the Lyme (still not convinced of this diagnosis though) just reared it's head again, because the city was very tiring.
But in the spaces between all those health crises, you could also weave in the mold exposures/leaks and it starts to tell a different story.
I do not use recreational drugs at all and that episode was a one time thing so I didn't know this apparently until recently but bad weed can be moldy.
So what if this is just about cumulative exposure?
Apparently if you've already been exposed to mold and then you get exposed to more mold (again) in a different way (the weed) it can set you off in a way that a not previously exposed person might not experience?
My question is, what the hell do I do know?
I took the VCS test and got 80 out of 90 questions right. But they're still considering me 'toxic' because several of their questions were along the lines of "Do you think you've been exposed to mold recently" and of course I answered yes to all.
But I sound sicker than I am. Supplements and various modalities and clean eating have helped to stabilize me quite a bit. I am off all topical and oral steroids for my skin. I only use the topical as needed now- once every few weeks.
I am functional but when you read these mold stories it makes it sound like you need to burn all your stuff and move into a tent in the Arizona desert.
When I went back to clean the apartment out with my mom, it was admittedly pretty dusty as I hadn't been there in a while. The next day I had really bad breathing problems (that then lasted for several days in a row) and the dizzy, spacey feeling had returned.
I was reading about BTM last night and had basically concluded that I was doing my best and that I was not going to guilt trip myself for bringing all my possessions from my apartment back to my parents place and into my old bedroom. I was looking for a particular piece of clothing last night and I had to rifle through a bunch of the suitcases (still not unpacked) and I found what I needed and went to bed.
This morning I woke up and my throat was really phlegmy again! More so that it's been in a long time.
So now I'm back to thinking I'm going to have to burn all my stuff, all my family's suitcases and that we're going to have to rip up the carpeting in my bedroom where there are some piles of clothes from said apartment.
I'm so, so tired and I feel like the Poor Health Carousel never ends. Tell me there's another way.
P.S- I am so sorry this is so long. I just didn't want to omit anything important, to the puzzle. And for those who more vigilant about preserving what health they have, who feel like some of my actions seemed careless, you are right.
It's just that I've been living a sort of half life since I was a kid, full of sad compromises, and when I moved to NY, I wanted to see if maybe it was all psychosomatic, or if I was just lazy as some people in my life kept trying to tell me. So I made some dumb choices to prove to myself that I was as healthy as everyone else.
The problem is, I'm not. I never was.
To anyone who's actually read this far, thank you thank you, you are my angel!
Childhood: (from around age 6-10)
Developed serious asthma (hospitalized on several occasions) + allergies
Chronic UTIs- structural issues ruled out
Insomnia, depression and anxiety
High School:
Childhood issues persisted while CFS type symptoms developed
Weight gain, hair loss, severe acne, ADD symptoms appear
Diagnosed with Hashi's, aged 16 (to this day still take desiccated thyroid)
Remission of some symptoms achieved after beginning thyroid treatment
College:
IC diagnosed and I had to drop out of school
Lyme diagnosed and I was treated with IV abx 2x daily for 6 months
Post College:
Full remission of ALL symptoms except IC after Lyme treatment-for 2 years.
(Keep in mind, my doc gave me EVERY medicine and supplement + dietary modification under the sun so it's hard to know what worked + why!)
Late 20's:
Weight gain, acne, hair loss, anxiety, insomnia + UTIs return
Asthma (which had been less of an issue) returns
Start getting hives with food
Early 30's:
Full blown histamine intolerance (two scratch tests negative for real food allergies)
low blood pressure
'Meniere's' type symptoms
phelgmy back of the throat in morning
drug + supplement intolerance
pins and needles, fasiculations
RA type symptoms in finger + tailbone
memory/cognition issues
brain fog
panic attacks-briefly
tests came back positive for EB
My question is this: I had been doing a bit better when I decided to move to NYC. I moved into an old prewar building without central air, only dusty window units. There was no fan in my bathroom but I mostly tried to keep the window open after showering. There was a guy upstairs who was crazy and there were leaks in every room of my apt at some point. Management did very little to curb his behavior. By the time I was itching to leave (literally itching) the leaks had reached my bedroom and my ceiling basically a hole in it. All this dust/water came through and management sent people to repair it.
Luckily, I was so frustrated with the whole situation that wasn't spending much time there by that point. I had basically informally moved back in with my family in Connecticut.
But my question is, do you think mold could have caused the histamine intolerance?
When I moved in, there had already been one leak. But it was in the back room, that I spent almost no time in.
Roughly about 5 months after moving in, I have having a lot of hives with food.
HOWEVER, it that period of time, I was doing a lot of other things that likely contributed to histamine issues like drinking a fermented kefir soda drink very often (because it helped my bladder) and taking Benadryl and Advil PM every night to help me sleep. I now know that too many NSAIDs can cause hives and perforate the gut.
I then went to a acupuncturist/NAET specialist and the hives went away. I had great skin for a while and then did something absolutely stupid. As a birthday present to myself, I went and got fillers in my face. I thought it would be ok as my skin had been clear, probably for over a year.
But a month of so after getting the fillers, the hives came back. And not only did they come on with food, they were there all of the time, like big inflamed plaques. I could barely eat anything, let alone leave the house.
I have been struggling with the skin stuff since then. All normal allergies have been ruled out through back patch tests, biopsies, etc. My skin allergy derm (who is wonderful) is still mystified.
Throughout this time, I was also dealing with a blackish strip on the grouting in my shower. I was a scared of it and in denial and so honestly, it just stayed there for a long, long, long time.
Very slowly over time, its also occurred to me that my asthma has slowly gotten worse again. It had been pretty under control for a good long while. At the time mold didn't occur to me and I just chocked it up to city life, especially in the humid summers. I realized that I also had a minor infection in the back of my throat that would produce phlegm upon waking but would calm down for the rest of the day. I still have this- its been a few years, off and on.
The third, and by far dumbest thing I did living in New York was to one day eat half of a pot brownie- from someone I didn't know very well.
Of course I had a terrible, scary reaction and had to go the hospital. They gave me Ativan, laughed at me (it was a slow day in ER and I was happy to entertain I guess?) and sent me home.
But my brain has never been the same since. I've listed all the symptoms above and won't get into them again here as this has already turned into the 'War and Peace' of health chronicles.
I'm bringing up everything in detail here because on the surface, you could look at my story and say "Here's someone who moved to a dirty, exhausting city when she was still immunocompromised and made a few bad choices. And now she's sick."
Obviously my health issues go way back BEFORE I was exposed to that apartment. So you might say, for example, that the Lyme (still not convinced of this diagnosis though) just reared it's head again, because the city was very tiring.
But in the spaces between all those health crises, you could also weave in the mold exposures/leaks and it starts to tell a different story.
I do not use recreational drugs at all and that episode was a one time thing so I didn't know this apparently until recently but bad weed can be moldy.
So what if this is just about cumulative exposure?
Apparently if you've already been exposed to mold and then you get exposed to more mold (again) in a different way (the weed) it can set you off in a way that a not previously exposed person might not experience?
My question is, what the hell do I do know?
I took the VCS test and got 80 out of 90 questions right. But they're still considering me 'toxic' because several of their questions were along the lines of "Do you think you've been exposed to mold recently" and of course I answered yes to all.
But I sound sicker than I am. Supplements and various modalities and clean eating have helped to stabilize me quite a bit. I am off all topical and oral steroids for my skin. I only use the topical as needed now- once every few weeks.
I am functional but when you read these mold stories it makes it sound like you need to burn all your stuff and move into a tent in the Arizona desert.
When I went back to clean the apartment out with my mom, it was admittedly pretty dusty as I hadn't been there in a while. The next day I had really bad breathing problems (that then lasted for several days in a row) and the dizzy, spacey feeling had returned.
I was reading about BTM last night and had basically concluded that I was doing my best and that I was not going to guilt trip myself for bringing all my possessions from my apartment back to my parents place and into my old bedroom. I was looking for a particular piece of clothing last night and I had to rifle through a bunch of the suitcases (still not unpacked) and I found what I needed and went to bed.
This morning I woke up and my throat was really phlegmy again! More so that it's been in a long time.
So now I'm back to thinking I'm going to have to burn all my stuff, all my family's suitcases and that we're going to have to rip up the carpeting in my bedroom where there are some piles of clothes from said apartment.
I'm so, so tired and I feel like the Poor Health Carousel never ends. Tell me there's another way.
P.S- I am so sorry this is so long. I just didn't want to omit anything important, to the puzzle. And for those who more vigilant about preserving what health they have, who feel like some of my actions seemed careless, you are right.
It's just that I've been living a sort of half life since I was a kid, full of sad compromises, and when I moved to NY, I wanted to see if maybe it was all psychosomatic, or if I was just lazy as some people in my life kept trying to tell me. So I made some dumb choices to prove to myself that I was as healthy as everyone else.
The problem is, I'm not. I never was.
To anyone who's actually read this far, thank you thank you, you are my angel!