is this the new baseline?

[caledonia]

Hi hmnr asg,

With a job in silicon valley tech, I would think you would have short and long term disability through your work if you've been paying into it.

I found this article on non-citizens and SSDI. It sounds like you would have to been paying into SSDI to qualify for it. So if you were exempt from paying for it, your next option would be Canadian disability.

https://www.disability-benefits-help.org/faq/non-citizen-social-security-disability-benefits

The idea of moving to a cheaper area in Canada sounds good. An area with close proximity to good doctors is a plus.

 

[Wishful]

Proximity to good doctors would be a plus, but how do you find really good doctors who can do anything worthwhile about ME/CFS? I was living in Vancouver when I developed ME/CFS. The availability of doctors, including those at the universities, was still just a waste of time. I discovered that small-town medical services were effectively no worse. Driving 400 km to see a specialist is inconvenient, but since none of those visits actually helped, I don't consider being closer to specialists to really be worth anything. I don't expect to see another specialist for ME/CFS until researchers come up with a treatment that needs a prescription from a specialist.

When I decided to move out of Vancouver (thinking that city living might be a health burden on top of whatever I had), I wanted to be close enough to a city to drive in occasionally for shopping and whatever else was unavailable in small towns. I haven't bothered driving to Edmonton for 5+ yrs; just no need to, nor desire to. The times when I did go (to see a specialist), I made up a list of shopping to do. Once I was actually there, and dealing with traffic, crowds, etc, I just made one or two stops on the way out, and ignored the rest of the list. My neighbours have the same reaction. Cities are for people who appreciate what cities offer. I'll stay here in my quiet woodlands.

 

[Learner1]

There are some good naturopathic doctors in the Vancouver area who practice functional medicine which can do a lot for ME/CFS. I live in Seattle, but drive up occasionally to see my doctor's colleague up there.

The approach in the attached diagram has gotten me a long way - my doctor's have found and treated problems in every box in the diagram.

I haven't had much luck here with MDs, but fly down to Silicon Valley to see my ME/CFS specialist in Mountain View.

I doubt you would find similar resources in eastern Canada.

Best wishes...

 

[Sherlock]

Prednisone would be a great idea but its very hard to get a doctor to prescribe it for me!

I've heard of people who are desperate swallowing the cortisone topical creme. I don't know if it's effective or safe that way.

 

[Sherlock]

I hate hot weather. It's 10C outside right now. I had frost a few mornings ago. I'd hate to move somewhere that's hot.

I'd always hated heat, long before CFS. After a long hot day outdoors, I'd get something like mild flu symptoms and inability to concentrate, which I now would identify as something similar to PEM. Strangely, that all got much better after I got CFS - though heat is infamous as a mast cell activator and I firmly believe that aberrant MCs underlie most of my current problems.

I always did and mostly still do like the cold. Sometimes, I might take my shirt off and lay in the snow in the woods just for the fun of it. If your internal furnace had already come on from the walking, it's easy anyway. It might be therapeutic. as you likely know.

 

[hmnr asg]

@Wishful @lafarfelue @Mel9
I saw my new doctor this morning to get a request for sick leave (the old one left her practice). He was a doctor in the Stanford network. I went in there knowing it will another awful encounter with a medical doctor who is going to dispute my CFS and give me a hard time. And that is exactly what happened. He saw on my chart that I have anxiety and started telling me i should take antidepressant. So i am having the worst time today and i have to argue with this moron that my CFS has nothing to do with my anxiety. And he tried a couple of times do to his "gotcha" thing and said things like: "aha! you said youre not depressed, but you said you're having a hard time at work!" and to which i replied: "YES! cuz of my fatigue that just flared up two months ago! were you listening to anything i said?"
Anyways, i ended up yelling at him and having a very tense confrontation. Doctors can truly be awful. We pay these overpaid upper class a$$holes to help us, and they end up over and over again trying to prove us wrong and telling us we are making it up etc etc.
Anyways, i yelled at a doctor, and i liked it [new Katy Perry song? lol]. And I got my note to take a month long leave from work. And of course i will try to find a new doctor. My old one was actually very kind and had a lot of empathy. She was a woman and the new one is a guy. I think empathy is something that is hard to get from some rich Stanford guy who has no obligation to give a damn and probably grew up thinking of himself as something special. As a guy in computer science i can never tell my client that their problem doesnt exist. In fact doctors are the only people who can not only dismiss their clients, but also belittle them and question their integrity. What a great profession. I went to school longer than an MD and i actually have to work hard for my money. Rather than just sit on a chair and spew out whatever that comes to my face hole with ZERO accountability.

Sorry for the rant! I hope i dont get banned

 

[hmnr asg]

Proximity to good doctors would be a plus, but how do you find really good doctors who can do anything worthwhile about ME/CFS? I was living in Vancouver when I developed ME/CFS. The availability of doctors, including those at the universities, was still just a waste of time. I discovered that small-town medical services were effectively no worse. Driving 400 km to see a specialist is inconvenient, but since none of those visits actually helped, I don't consider being closer to specialists to really be worth anything. I don't expect to see another specialist for ME/CFS until researchers come up with a treatment that needs a prescription from a specialist.

When I decided to move out of Vancouver (thinking that city living might be a health burden on top of whatever I had), I wanted to be close enough to a city to drive in occasionally for shopping and whatever else was unavailable in small towns. I haven't bothered driving to Edmonton for 5+ yrs; just no need to, nor desire to. The times when I did go (to see a specialist), I made up a list of shopping to do. Once I was actually there, and dealing with traffic, crowds, etc, I just made one or two stops on the way out, and ignored the rest of the list. My neighbours have the same reaction. Cities are for people who appreciate what cities offer. I'll stay here in my quiet woodlands.

100% agree. I live in Silicon valley with Stanford and UCSF hospitals right by my side. And the insurance i get from my employer allows me to go and see any specialists. I have been to the Open Medicine institute and Dr Montoya's clinic. It's all a waste of money and time. There is no cure for CFS and you can go to the biggest hospital to the most educated doctor and there is no difference. At least a small town country doctor will show you more empathy.
When they discover the cure to CFS and they have some kind of a working model then i assume it would pay off to be near major hospitals that specialize in it.

 

[hmnr asg]

Hi hmnr asg,

With a job in silicon valley tech, I would think you would have short and long term disability through your work if you've been paying into it.

I found this article on non-citizens and SSDI. It sounds like you would have to been paying into SSDI to qualify for it. So if you were exempt from paying for it, your next option would be Canadian disability.

https://www.disability-benefits-help.org/faq/non-citizen-social-security-disability-benefits

The idea of moving to a cheaper area in Canada sounds good. An area with close proximity to good doctors is a plus.

Thank you for much for finding this information for me. I am looking over it now. Right now I am going to use the FMLA leave of absence https://www.calchamber.com/california-employment-law/pages/fmla-cfra-overview.aspx
If I dont get better I will have to try the SSDI and other routes.

 

[Learner1]

Your rant was well called for. I, too, have had similar experiences with doctors yelling at me, dismissing me, and offering antidepressants.

As a patient, I have come a long way. My functionality is far above what it was 2 years ago, and it has taken dogged determination, leaving no stone unturned to uncover immune system abnormalities, mitochondrial issues, endocrine, gut, and nervous system dysfunction, mold and heavy metal toxicity, nutrient deficiencies and imbalances, and genetic issues that have exacerbated my problems.

While I wish someone woukd come up with a pill to fix us or hand us a solution tied up in a nice bow, unfortunately, I think that wading through complexity and slowly normalizing each area of the body is going to provide results in the short-term.

You are exceptionally lucky to live in a geography with doctors better qualified than almost anywhere in the world to help you make your way through a thorough investigation and to take advantage of the best treatments any patient is getting anywhere.

So sorry you found a bad doctor today....there are many others that can help down there. I hope you find one soon.

 

[CFS_for_19_years]

@hmnr asg, your experience with your doctor today reminded me of this video. I hope it gives you a laugh.

 

[hmnr asg]

@hmnr asg, your experience with your doctor today reminded me of this video. I hope it gives you a laugh.

That was BRILLIANT!
Thank you! Wish I could send this to my doctor lol

H

 

[caledonia]

Thank you for much for finding this information for me. I am looking over it now. Right now I am going to use the FMLA leave of absence https://www.calchamber.com/california-employment-law/pages/fmla-cfra-overview.aspx
If I dont get better I will have to try the SSDI and other routes.

I forgot to mention - you are in luck - California is one of the few states with state disability. Check that one out too.

 

[frozenborderline]

My baseline has been pretty stable over the 17 years, so by that I would guess that your crash is temporary.

For me, my symptoms abruptly get worse, and stay so until I take some T2 (3-5 diiodothyrone) or iodine (part of which the thyroid gland converts into T2), and that resets something and brings me back to my regular baseline. I have to do that every 21 days (pretty precise and consistent timing). T2 may not work for you, but this does show that it's possible to drop from baseline and return with the appropriate treatment. BTW, T3 and T4 don't have any effect, while T2 does.

If you have some supplemental iodine (a daily multivitamin/mineral tablet worked for me originally) or some tincture of iodine, you could give it a try. If you've already had a multivitamin/mineral tablet and it didn't work, T2 probably won't help either, but really I'm just guessing.

Also, my ME/CFS started with a type IV food sensitivity. Triggering on a food would cause a flare up of symptoms 48 hrs later, then fade again over an hour or so. A small basket of cherries triggered a particularly bad reaction, and made my symptoms flare up and stay there. I quickly went to my doctor, told him I was now stuck with maximum symptoms and that I'd probably treat it with suicide, because there was no point in staying alive with that. He gave me a prescription for prednisone, and after 5 days of no effect, it kicked in and gave what felt like full remission. It wore off, but I returned to my previous baseline and temporary flare-ups. Prednisone gave remission the second time I tried it, but then stopped having any effect after that. I consider prednisone a big hammer to get things unstuck. If you haven't had that before, I'd recommend trying that before giving up.

I'm not sure what else to recommend to try to reset things, but my experience is that it is possible.

where do people here get their T2?

 

[Wishful]

I got mine from San corporation, but they no longer offer it. I found a supplier on Amazon last time I looked. It's the 3-5 diiodothyronine that works for me. The last batch added the 3-3 isomer, but that didn't make it more effective. Since a small drop of tincture of iodine seems to be just as effective for me, I've been using that after the T2 (years past its expiry date) was no longer effective.

I don't know if T2 will work for anyone else, but if you want to experiment in the hopes of finding something that will work for you, I think it's a reasonable choice. It certainly has a powerful effect on me. I would like to know how it's doing whatever it's doing, but I'm just grateful that it's working.

The capsules I used had 100 mcg of 3-5 T2, and one capsule was enough for full effect, lasting 21 days. I can't remember testing smaller doses. Larger doses weren't more effective.

 

[CristinaH]

There are some good naturopathic doctors in the Vancouver area who practice functional medicine which can do a lot for ME/CFS. I live in Seattle, but drive up occasionally to see my doctor's colleague up there.

The approach in the attached diagram has gotten me a long way - my doctor's have found and treated problems in every box in the diagram.

I haven't had much luck here with MDs, but fly down to Silicon Valley to see my ME/CFS specialist in Mountain View.

I doubt you would find similar resources in eastern Canada.

Best wishes...

I am in the Vancouver area and am looking for a good Naturopathic Dr. For moderate ME/CFS. Are there any here that you have been to that you would recommend? Any help would be greatly appreciated!

 

[Learner1]

You might try Dr Hughes here:

http://www.mapleridge-naturopathic.com/about-us/

Feel free to PM me if you have questions.

 

[hmnr asg]

This is an old thread from 2018. I had crashed and I was scared and posted this to get some kind of reassurance that I will go back to my baseline.
Well, I never went back to my baseline. I have been severe ever since that crash.
Have lost four years of my life just being in bed.
I daydream about the pre-crash days when I was still mild. Life was so so good! being able to shower, walk, work, travel... There were some limitations due to my mild cfs, but absolutely nothing compared to what i have been going through ever since.

 

[hapl808]

Well, I never went back to my baseline. I have been severe ever since that crash.
Have lost four years of my life just being in bed.

Relatively similar timeline here. Always hope that somehow I will improve enough to get back to where I was at least five years ago (still moderate then), but haven't found anything yet.

 

[hmnr asg]

Relatively similar timeline here. Always hope that somehow I will improve enough to get back to where I was at least five years ago (still moderate then), but haven't found anything yet.

im sorry you're also going through this.
I have tried so many things with no luck. I feel like this is it...
I keep thinking back to four years ago when i pushed myself and caused this crash and feel so much regret and anger. But nothing to be done now

 

[Loomcgoo]

I have often had the same thought, it gives me the sense that I could have controlled this disease.

I really fear that ME is constantly lurking shrinking our limits, so there will always be a point where we over-do and crash. Then we blame ourselves for the crash and get stuck in an "if only I hadn't done so much" loop, rather than blame ME.

Limiting the PEM as much as possible is a good strategy though. But it isn't curative, it is a management strategy (which may widen our energy envelope).

I have improved from a severe crash 4 years ago, but no where near my baseline. Still unable to work and can manage only basic of daily living, although some days just seem to pass me by altogether. Although I can have an occasional day that is easier and my mind is a bit brighter and I actually feel normal for a bit.

For the time being, progress, for me, is measured by the easing of symptom severity rather than getting near or back to my baseline. I think there is a secret part of me that still hopes a return to my previous baseline is still on the cards. I'll need to have a word with that secret part, 😏 hope can lead to serious disappointment 😞.