Has anyone recovered in the Bay area ?

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ebethc

Senior Member
Messages
1,901
debored13 said:
I don't think that there are air quality metrics that measure the specific toxins and biotoxins that me/cfs people react to, which we haven't even identified yet.
Click to expand...

true; I'm currently wondering if a mechanical problem is causing my neuro system to be on "high alert" and if I fixed that then I'd be more tolerant of biotoxins, etc... My first MRI showed abnormalities but I haven't discussed w the neurosurgeon yet, so it could be something or it could be nothing..
 
frozenborderline

frozenborderline

Senior Member
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4,405
ebethc said:
IOW, you can feel great someplace and it's totally ephemeral, so I'm reluctant to chase the mirage of the perfect place.... it's something that I think about a lot, though.
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I think there are some locations that are good year round, but this is largely true and something thr creator of thr maps has acknowledged. However one can still note general trends over the entire country and which places come up as really good or really bad.

Also, people have made an effort to compile information on seasonal changes in locations in a comprehensive way. General trenfs,: if there are places that only seem to have a little bit of "badness" most of the time, they tend to get noticeably bad before and durinf storms, but really pristine places stay good during storms. In new england, winter tends to be the best season for outdoor air, but in a lot of the country this is not true and late fall and winter things get worse-- i noticed this in Vegas.

But there are almost certainly places good enough that they stay good almost every day of the year, although that may not be true for long.
 
E

ebethc

Senior Member
Messages
1,901
debored13 said:
In new england, winter tends to be the best season for outdoor air, but in a lot of the country this is not true and late fall and winter things get worse-- i noticed this in Vegas.
Click to expand...

yes, winter air on the west coast is the worst.... I used to live in boston, but I don't remember the air quality, mostly the freezing cold and the hot/humid was the issue for me...
 
hmnr asg

hmnr asg

Senior Member
Messages
574
I am also from the Bay area.

1- I saw Dr Chedda and she told me the blood tests would be covered but i ended up having to pay 2k out of my own pocket. I posted a long thread about it:
https://forums.phoenixrising.me/thr...-chheda-at-the-open-medicine-institute.50658/

Of course nothing came out of visiting her.

2- I have been getting much worse since I moved here. I got sick in Canada in 2010 and moved here in 2014 and have been getting progressively worse. I am going to quit my job and go back home to canada in April 2020. I was mild when I came here for a tech job and now I am having a hard time even showering. Still good enough to pack my stuff and go back home to Canada though. Hope my cat likes snow :S
I dont think I got worse because of the air, im pretty sure it was the stressful tech job :cry:

I have also been to the Stanford CFS clinic and that was a waste of time too.
And I can attest to the fact that Stanford doctors are pretty awful.

H
 
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Jyoti

Jyoti

Senior Member
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3,442
@crypt0cu1t --I'm so happy that was the case for you. It occurs to me that what we are doing in this instance is what we do all the time. Some things work for some of us (doctors, protocols, medicines, diets, etc.) and work incredibly well for a sub-set thereof. And...don't work at all or very minimally for others. And yet, what can we do but try the things that seem promising for each of us individually? So often the results are disappointing, like seeing Dr. Chheda was for @hmnr asg, but it is good to be reminded that Dr. Chheda, for instance, has been a real life-changer for you. And might be for others with appropriate research and consideration.

Weighing costs and benefits (hoped for, never guaranteed) is part of this path, isn't it?
 
humanrising

humanrising

Senior Member
Messages
169
I live just north of SF and I think one of the worst aspects of the "bay area toxicity" is our love of tech. Its a EMF smart meter everyone single person on a divice 5 G and god knows what else " machine wise" we are subjected to. There was a ton of mining done in the bay area so there is a lot of mercury here and the east bay has lots of industrial issues that said, if I could afford to stay here I wouldn't leave no matter how toxic it is. The idea of finding a place that I can afford seems impossible let alone finding a place that is less polluted or toxic. I have a matter of months left before I am homeless.
I am sick and paralyzed trying find a place to move. I have lost so many of my friends since I became disabled but at least I have two left here and there is some comfort in knowing a place. If I have to go I would like to go north but I am super sensitive to mold. I can't stand the heat so don't know how I would cope south. My nervous system can't seem to deal with noise, so how in the heck do I live in a apartment complex. I can't shovel snow, couldn't drive hours to see a doctor on and on.
my disability income is below the poverty level which makes me too poor to qualify for low cost housing so that leaves me with very few options. Do I move where there is no doctor? How do I get my medications? How in the heck do I look for a place if I have to travel or move my things. The list of HOW the BLEEP BLEEP do I do this is crazy long.

Every time I drive to the store and see all the people lined along the road way in tents and tarps my stomach tightens and the numbers seems to get worse each month. I live in fear that this is where I am heading, all because I got sick. I had money in my savings account, a good job, great credit I was super responsible. A " model citizen" that got sick too young to have to be collecting on Medicare.

The bay area is where there are some of the best doctors or some of the few doc's who treat but good luck getting in to see them. I have never been able to see anyone here and if I could get in I couldn't afford to see any of them if I did. Sandford has lost Montoya and they have only one doctor who sees ME patients. I can't say much about his treating paradigm but from what I ve read its pretty sad. Most of the doctors worth seeing their practices are full or closed. They are getting older and will be retiring and there really are no new young people to take their place.

We have plenty of high profile medicine being practiced here but I don't know if any of that matters . Right before thanksgiving I went to UCSF to see a pain specialist. He knew what he was going to offer me before I got there. He couldn't speak to any of my general pain or fibromyalgia he even told me my joint pain probably wasn't really joint pain. I just thought it was. I would have to see a specialist if I wanted to ask about my fibromyalgia pain or my more systemic pain or my questions about connective tissue possibilities. I actually thought that was what I was doing going to pain specialist.

I ended up getting occipital nerve block that " may or may not work but it is super safe" I ended up in so much pain I thought my head would literally explode . My migraine headache treatment left my in bed for ten days wishing I was dead. I was being treated for a piece of my body.. a piece of my symptoms by a doctor no matter how good intentioned can't begin to see how any treatment might play out for someone with ME ...assuming I have ME since I have never seen anyone who can really say this is what I have.

there is no easy road or soft place to land
 
M

maddskillzz23

Messages
2
I’m as sorry that many of you have had bad experiences or heard bad things about Dr. Chedda, but for me she has been nothing but a godsend. I have not been diagnosed with the things that many of you have said, but I also think every case is different. She has literally gotten me to rise from the dead. Yes she is expensive but for me it is an investment into my present and future. To me she is a great person, a good doctor who is trying to help those that have been failed by the system and medicine in general. We have all been dealt a bad hand and it’s very easy to direct anger at people that are supposed to be helping. All I can say for those of you who Dr. Chedda have not helped that if not her then there may be someone else out there that will help. Don’t give up, don’t ever give up
 
frozenborderline

frozenborderline

Senior Member
Messages
4,405
humanrising said:
I live just north of SF and I think one of the worst aspects of the "bay area toxicity" is our love of tech. Its a EMF smart meter everyone single person on a divice 5 G and god knows what else " machine wise" we are subjected to. There was a ton of mining done in the bay area so there is a lot of mercury here and the east bay has lots of industrial issues that said, if I could afford to stay here I wouldn't leave no matter how toxic it is. The idea of finding a place that I can afford seems impossible let alone finding a place that is less polluted or toxic. I have a matter of months left before I am homeless.
I am sick and paralyzed trying find a place to move. I have lost so many of my friends since I became disabled but at least I have two left here and there is some comfort in knowing a place. If I have to go I would like to go north but I am super sensitive to mold. I can't stand the heat so don't know how I would cope south. My nervous system can't seem to deal with noise, so how in the heck do I live in a apartment complex. I can't shovel snow, couldn't drive hours to see a doctor on and on.
my disability income is below the poverty level which makes me too poor to qualify for low cost housing so that leaves me with very few options. Do I move where there is no doctor? How do I get my medications? How in the heck do I look for a place if I have to travel or move my things. The list of HOW the BLEEP BLEEP do I do this is crazy long.

Every time I drive to the store and see all the people lined along the road way in tents and tarps my stomach tightens and the numbers seems to get worse each month. I live in fear that this is where I am heading, all because I got sick. I had money in my savings account, a good job, great credit I was super responsible. A " model citizen" that got sick too young to have to be collecting on Medicare.

The bay area is where there are some of the best doctors or some of the few doc's who treat but good luck getting in to see them. I have never been able to see anyone here and if I could get in I couldn't afford to see any of them if I did. Sandford has lost Montoya and they have only one doctor who sees ME patients. I can't say much about his treating paradigm but from what I ve read its pretty sad. Most of the doctors worth seeing their practices are full or closed. They are getting older and will be retiring and there really are no new young people to take their place.

We have plenty of high profile medicine being practiced here but I don't know if any of that matters . Right before thanksgiving I went to UCSF to see a pain specialist. He knew what he was going to offer me before I got there. He couldn't speak to any of my general pain or fibromyalgia he even told me my joint pain probably wasn't really joint pain. I just thought it was. I would have to see a specialist if I wanted to ask about my fibromyalgia pain or my more systemic pain or my questions about connective tissue possibilities. I actually thought that was what I was doing going to pain specialist.

I ended up getting occipital nerve block that " may or may not work but it is super safe" I ended up in so much pain I thought my head would literally explode . My migraine headache treatment left my in bed for ten days wishing I was dead. I was being treated for a piece of my body.. a piece of my symptoms by a doctor no matter how good intentioned can't begin to see how any treatment might play out for someone with ME ...assuming I have ME since I have never seen anyone who can really say this is what I have.

there is no easy road or soft place to land
Click to expand...
Outdoor toxin plumes associated w TCE (solvent used in computer manufacturing) Superfund sites in bay area and biotoxin may be a problem as well as the eMF
 
frozenborderline

frozenborderline

Senior Member
Messages
4,405
humanrising said:
I can't stand the heat so don't know how I would cope south. My nervous system can't seem to deal with noise, so how in the heck do I live in a apartment complex. I can't shovel snow, couldn't drive hours to see a doctor on and on.
Click to expand...
My heat intolerance and sun intolerance were quite extreme when I left my place in vermont this summer. After months In better air they went away but come back when I'm in bad air. For example I can't tolerate taking a bath or using and indoor hot tub but I do amazingly well in outdoor hot tub in good areas. I sweat normally again.

Not to downplay the difficulties. Financially irs a nightmare and my only income is ssi. If I'd gotten out before the mold gave me cci and before I was this sick things would be easier. When i was housebound I thought mold avoidance would be too hard to do. Then I had to do it after I became bedridden bc I was so desperate to not be poisoned anymore.

You may want to consider housing in certain suburbs in Colorado, suburbs of Vegas, etc. Seeing if you can get a friend or family member to take u camping somewhere known to be good even for a short time...
 
humanrising

humanrising

Senior Member
Messages
169
If I'd gotten out before the mold gave me cci and before I was this sick things would be easier.

You may want to consider housing in certain suburbs in Colorado, suburbs of Vegas, etc. Seeing if you can get a friend or family member to take u camping somewhere known to be good even for a short time...[/QUOTE]

I am afraid there is no way i could "camp". I am in so much pain it would impossible.... maybe if it was sheshe rich people camping with a lovely bed on a pedestal with a mosquito net and a fan for when its hot and fire for cold...... just day dreaming :)

You probably have this posted somewhere here but I haven't seen it...… how did you get CCI from mold exposure?
 
marlunette

marlunette

Messages
70
The Bay area has a horrible reputation for people doing mold avoidance or pursuing locations effects. Everyone reacts differently but the Bay area seems pretty universally bad.

I got sick while living in a moldy house in the midwest and then moved to Seattle. Once I was there I got worse and then discovered mold avoidance. I thought I could be the exceptional person who recovered while in Seattle.

And I did make some improvement but I was spending all of my spare time focusing on keeping my health at baseline. Then something changed and I got dramatically worse within a couple of months. I was starting to get serious joint and connective tissue problems and I could feel my head getting wobbly. It was incredibly scary and I left pretty abruptly.

Now I live in Phoenix and I am pretty much recovered. Part of that was from seeing Dr. Chheda and a lot of it was from rest and getting out of a city that was making me sick. Each city has a unique outdoor and indoor microbiome and if your body is reacting to that microbiome you can't get around it.
 
hmnr asg

hmnr asg

Senior Member
Messages
574
I am thinking of going to the dead sea (on the Jordanian side) for a month. I already looked at some Airbnbs and I think I can afford it.

What do you guys think? @debored13 do you want to come along? its the lowest point on earth (on land) and we can go dip in the dead sea :) I think there should be zero mold there.
 
frozenborderline

frozenborderline

Senior Member
Messages
4,405
Ive actually heard mostly bad reports about the dead sea and most of Israel recently at least. You could talk to simcha macgregor , on Facebook, hes been to Israel since starting mold avoidance and he found it veey challenging place
 
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