Has anyone recovered in the Bay area ?

[frozenborderline]

I think there is enough anecdotal evidence of people reacting terribly to the air in the bay area to heed it, even though we very unfortunately dont have much science on this yet.

Of course , i understand needing to live with ones parents due to how sick one is, but one has to consider rhe possibility that things can always get worse. Two years ago i wad starting to be moderate and almost housebound and thought I could never leave my house and area. When i eventually left i had CCI ans had to be carried out into the back of a van so I could travel horizontally.

Unpleasant to consider but I would feel unethical not bringing up the idea that if you are in the wrong enviroment you can not just stall healing but get worse and worse. I never thought i would become bedridden

 

[Davsey27]

I think there is enough anecdotal evidence of people reacting terribly to the air in the bay area to heed it, even though we very unfortunately dont have much science on this yet.

Of course , i understand needing to live with ones parents due to how sick one is, but one has to consider rhe possibility that things can always get worse. Two years ago i wad starting to be moderate and almost housebound and thought I could never leave my house and area. When i eventually left i had CCI ans had to be carried out into the back of a van so I could travel horizontally.

Unpleasant to consider but I would feel unethical not bringing up the idea that if you are in the wrong enviroment you can not just stall healing but get worse and worse. I never thought i would become bedridden

What are alternatives to the bay area when you have
no savings,social security ?

I am open to possibilities and looking for a doc to diagnose me with cfs

Thanks debrored

 

[frozenborderline]

What are alternatives to the bay area when you have
no savings,social security ?

Depends on your level of functioning. Maybe you could crowdfund to cover a move or living expenses. I had to and am currently doing that.

A diagnosis can be very helpful. You could look at the Bateman Horne clinic in SLC utah. I think they take insurance. SLC is also bad but would be a reasonable trip from somewhere in southern Utah, or new mexico or Wyoming.

 

[Davsey27]

Depends on your level of functioning. Maybe you could crowdfund to cover a move or living expenses. I had to and am currently doing that.

A diagnosis can be very helpful. You could look at the Bateman Horne clinic in SLC utah. I think they take insurance. SLC is also bad but would be a reasonable trip from somewhere in southern Utah, or new mexico or Wyoming.

Curious what is crowdfunding?

 

[frozenborderline]

Curious what is crowdfunding?

GoFundMe etc

 

[Davsey27]

GoFundMe etc

So essentially you raise money online for your individual cfs case and advertise on facebook?

Thank you debored

 

[gbells]

This was my experience in atlanta

These are the old guard types who believed the NIH propaganda. Luckily they are just the minority. I would find a new doc and file a complaint with the medical board for patient abuse.

 

[gbells]

Maybe he'll change his mind if he gets ME and becomes disabled himself (the mean doctor).

 

[Davsey27]

Yup just checked with Dr.Kaufmanns office

He's moving to seattle and the center does not accept

insurance.They said Stanford does

 

[ebethc]

...and recently a couple not-great things about chheda from a friend (and chheda is expensive). I have heard pretty good things about Kaufman but he is leaving that area.

wow... why if kaufman moving to seattle? what have you heard about chheda? PM me if you don't want to post it publicly

 

[Jyoti]

wow... why if kaufman moving to seattle? what have you heard about chheda? PM me if you don't want to post it publicly

Actually, I would like to know as well. Kaufman's departure is a big deal and disquiet around Chheda is of concern to me.

 

[Davsey27]

wow... why if kaufman moving to seattle? what have you heard about chheda? PM me if you don't want to post it publicly

I have no idea why

Still haven't heard of anyone in the bay area that treats this condition well

 

[Davsey27]

Maybe he'll change his mind if he gets ME and becomes disabled himself (the mean doctor).

My father's friend who is doctor said that everyone has ebv.Yes I agree that when it happens to you then you will believe it although i wouldn't wish this on anyone

 

[Jyoti]

@Davsey27 --you mentioned wanting a diagnosis AND wanting treatment. (Hey, how crazy is that, wanting both????) I have some experience with the Center For Complex Diseases, as mentioned in the threads I posted above. I also have a PCP who is decent and who diagnosed me, prescribed LDN and has been somewhat reasonable in terms of believing in the reality of the disease. After presenting him with a list of all my symptoms and a tentative diagnosis of ME/CFS which he rubber-stamped, he suggested I watch 'Unrest.' So at least he'd seen it!

Obviously, you'd like a physician who understands your illness and works with you to find ways to treat it and if not that, at least alleviate the symptoms. While this should not be a big ask, of course, we all know it is. If any of the leads mentioned above are of interest to you, I am happy to elaborate, preferably by PM.

 

[ebethc]

Actually, I would like to know as well. Kaufman's departure is a big deal and disquiet around Chheda is of concern to me.

what have you heard about chheda?

 

[Jyoti]

I haven't heard anything but a slow trickle of good stuff. This is new news to me. Obviously, not everyone is going to love anyone, but I wonder about the CCD now. Why is Kaufman leaving? What is he doing next? And what happens at CCD? I recently started to see Dr. Curtin and felt good about it overall. The fact that Kaufman and Chheda were the senior clinicians was comforting.

 

[frozenborderline]

Chheda charges a lot. She uses unvalidated tests for certain infectious diseases, like igenex,and seems to diagnose basically everyone with Lyme or babesia, then prescribe heavy duty antibiotics or antimalarials.

She may also do valid and important immunological workups, but when patients may be too sick to separate out the stuff that's not BS, it puts them in a rough position especially when they are paying this much.

And the bay area has bad outdoor air, according to a very large amount of people. If i had the money to pay for an appointment with chheda id use it as a down payment on a truck and travel trailer or something. Two appointments with chheda might almost pay that all off. Not that im downplaying the difficulties of that lifestyle. But I know people who have regretted spending that amount of money ob specialists without addressing their enviromental problems.

It also seems like chheda may be pushing bacj on the cci thing a little because there are now so many people asking her to look into it. I know of at least one person who had cci but had to basically go around chheda to get the diagnosis.

If you need a doctor to look into treatable comorbidities like pots, mcas etc i think u can find one that takes insurance and ia not in the bay area. I don't think its worth it. But some people have found that centre very helpful. I guess it depends on your needs

 

[ebethc]

Chheda charges a lot. She uses unvalidated tests for certain infectious diseases, like igenex,and seems to diagnose basically everyone with Lyme or babesia, then prescribe heavy duty antibiotics or antimalarials.

She may also do valid and important immunological workups, but when patients may be too sick to separate out the stuff that's not BS, it puts them in a rough position especially when they are paying this much.

I think both of these things are a BIG problem for CFS patients; the 2nd point especially difficult if you don't have a caregiver to help navigate..

And the bay area has bad outdoor air, according to a very large amount of people. If i had the money to pay for an appointment with chheda id use it as a down payment on a truck and travel trailer or something. Two appointments with chheda might almost pay that all off. Not that im downplaying the difficulties of that lifestyle. But I know people who have regretted spending that amount of money ob specialists without addressing their enviromental problems.

San Francisco actually has excellent air. We usually and "A" rating across both dimensions in the state of the air report, Ozone and Particulate Matter. However...
1) Santa Clara County (ie primarily San Jose) and the E Bay (ie Contra Costa and Alameda counties, which contain Oakland and Berkeley) both have bad air quality consistently. When air quality for the "Bay Area" is reported, it averages San Jose-Oakland-San Francisco, and, well, this is why averages suck... the results are very misleading b/c it drags down the A/A rating that SF actually has..
2) we've gotten hammered w PM the past 3 years b/c of the wildfires.... This past year when the report came out, we got a "D" for PM... PM is one of my worst triggers, so this is a very bad trend for me personally... but mostly, our air is A/A..
https://www.lung.org/our-initiatives/healthy-air/sota/city-rankings/states/california/

It's the only major city w an A/A rating (although we have to figure out how to put out wildfires faster, or the PM rating will continue to be bad and we won't get back to our A/A again)

It also seems like chheda may be pushing bacj on the cci thing a little because there are now so many people asking her to look into it. I know of at least one person who had cci but had to basically go around chheda to get the diagnosis.

how is CCI dx? I've read different things...

If you need a doctor to look into treatable comorbidities like pots, mcas etc i think u can find one that takes insurance and ia not in the bay area. I don't think its worth it. But some people have found that centre very helpful. I guess it depends on your needs

I'm finding that it's hard to get docs who believe in MCAS... Also, I don't have EDS, but I've long thought that perhaps I have some connective tissue problem and I have no idea how to figure it out

 

[frozenborderline]

San Francisco actually has excellent air. We usually and "A" rating across both dimensions in the state of the air report, Ozone and Particulate Matter. However...

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. So I guess Im just speaking about large numbers of reports. I should rephrase what i said to sound less definitive but still urge caution. Eg we don't have formal study on it (because there's been almost zero study on environmental factors) but a large number of people with this illness report doing very poorly in the bay area. If you polled large numbers of people that are reactive or sensitive, i think that the bay area comes up poorly.

Interestingly people do report San Francisco being not very good, but also report that Palo Alto and Berkeley and mountain view are worse.

Ill pull up a map people have made in a sec.

 

[frozenborderline]

how is CCI dx? I've read different things...

Jeff has a good guide on his website mechanicalbasis.org