Author Topic: Is there a way out for me?  (Read 4466 times)

Persistence

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Is there a way out for me?
« on: April 20, 2018, 11:09:29 AM »
Hello, i'm posting in a forum with people who are good with money because i honestly don't know what to do anymore.

I'm 22 years old and i feel pretty doomed.

The TL:DR of my situation is that i've been severely ill for many years and i don't have the money i need (30k$) for appropriate health care and i keep getting worse.
You can read my fundraiser page for more info. https://www.youcaring.com/saveandrea

So, i need to find a way to make 30k USD in a short amount of time.

I used to be very intelligent and capable but now i have severe cognitive impairment(it's very hard for me to read) and extremely low mental and physical stamina(i have dozens of symptoms but these are the relevant ones).
In addition to this, i get severe post exertion symptoms and i lose weight(despite eating as much as i can and taking protein shakes my BMI is 14).

This means that if i spend one day "working" like a normal person, i will lose more than 1kg and spend 2 weeks in bed recovering, with a variety of symptoms and my cognitive impairment so bad i can't even talk to someone. 

Because of this, i almost never leave the house and when i do i have to recover for many days.

I absolutely have no idea how i can get the money i need. I would be willing to do ANYTHING to get a chance to live life but unfortunately there is very little my health will allow me to do.

Because of my illnesses i've been homebound for many years and as a result i have almost no friends. Nobody from my extended family has money to spare. So, before you say "family and friends" it isn't an option.

I know that always remaining positive and strong is THE virtue because there is always a way out (well actually this statement is false but you won't know if you don't try).
But what can i do? I don't see any chances at all and the energy i have to try things is extremely limited and i get worse every day.
The message i'm writing here is pretty much all my energy will allow me to do for the day. 

Fundraising is also extremely hard because I'm just one of the many fundraisers. 

Now, what i'm about to say doesn't feel right because i think being compassione is almost always the way to go but i honestly think that if you are
50+ year old, you get cancer and don't have the money to pay for treatment it's mostly your fault because you had SO much time to save up
for whatever emergency that can happen. If you live without saving up you are just gambling your life and hoping something unfortunate doesn't happen.
And if it does.. oh boy, it won't be fun i can tell you that.

I became severely ill when i was 17 years old and my parents have always basically told me "don't worry about money it's adult stuff" and lied to me
about the amount we have saved up by a ten fold. Not only it's completely unreasonable to expect a 17 year old to have saved up 30+k for medical emergencies,
I also grew up with parents that actively discouraged me from doing so and lied to me to give me a false sense of security. I simply did what my parents told me to,
i took school very seriously and in my spare time played videogames. Literally since i was like 5 years old my father kept repeating "school is extremely important everything
else doesn't matter do whatever you want, complete freedom". I know it's partially my fault for listening to them but it doesn't matter now.

Please refrain from the usual "i'm so sorry, good luck". I know that people don't mean anything bad when they say this but i've had literally hundreds of people until now telling me this
while they do absolutely nothing to help. It feels like i'm bleeding to death on the street while the people walk by and say "i'm so sorry, good luck". If you really do mean what you say then please
help me, not necessarily with money but we could talk on discord or something and try to brainstorm on what i could do, at least until i have no energy to talk anymore.

I would be lying if i said i wasn't desperate. Outrageous optimism eh? I'm trying my best to be persistent and maximize the chances of having a future but i don't see a win condition, i highly doubt someone is gonna jump out of nowhere and hand me 30k. Surely that someone is out there but i don't have the means and resources to reach out to 7 billion, or even million people. I have thought of what i can offer people for their help and i do have many valuable insights but they sound pretentious and chances are if someone is already rich/successful at life he will think he has these things figured out better than i do. 

jlcnuke

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Re: Is there a way out for me?
« Reply #1 on: April 20, 2018, 12:17:56 PM »
It sounds to me like you should be on, or apply for, SSDI and medicaid. I'm surprised your doctors haven't suggested it already honestly.

Persistence

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Re: Is there a way out for me?
« Reply #2 on: April 20, 2018, 12:31:03 PM »
It sounds to me like you should be on, or apply for, SSDI and medicaid. I'm surprised your doctors haven't suggested it already honestly.

Since i live outside of the US i would have to pay everything there out of pocket(it's explained more in depth in the fundraiser page). There is no italian insurance that will cover these costs. If you live outside of the US and you need to go there for highly specialized treatment you have to pay all of it out of pocket, there is no alternative.   

JLee

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Re: Is there a way out for me?
« Reply #3 on: April 20, 2018, 12:33:47 PM »
Is wikipedia incorrect here?

Visits by specialist doctors or diagnostic tests are provided by the public hospitals or by conventional private ones, and if prescribed by the family doctor require only a copay (of the order of $40 for a visit without any diagnostic test) and are free for the poor. Waiting times are usually up to a few months in the big public facilities and up to a few weeks in the small conventional private facilities, though the referring doctor can shorten the waiting times of the more urgent cases by prioritising them.[7] Patients, however, can opt for the "free market" option, provided by both public and private hospitals, which is paid completely out-of-pocket and has generally much shorter[citation needed] waiting times.

The World Health Organization puts health care in Italy as second best in the world.

Persistence

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Re: Is there a way out for me?
« Reply #4 on: April 20, 2018, 12:40:56 PM »
Is wikipedia incorrect here?

Visits by specialist doctors or diagnostic tests are provided by the public hospitals or by conventional private ones, and if prescribed by the family doctor require only a copay (of the order of $40 for a visit without any diagnostic test) and are free for the poor. Waiting times are usually up to a few months in the big public facilities and up to a few weeks in the small conventional private facilities, though the referring doctor can shorten the waiting times of the more urgent cases by prioritising them.[7] Patients, however, can opt for the "free market" option, provided by both public and private hospitals, which is paid completely out-of-pocket and has generally much shorter[citation needed] waiting times.

The World Health Organization puts health care in Italy as second best in the world.

As explained in the fundraiser page (i don't blame people for not reading of course, time is precious) i need to go to the US for highly specialized care that isn't available here. If it was, i could be cured or at least living a somewhat better life now. If i hadn't been to so many doctors i wouldn't have all the diagnoses that i have.

I don't know how they measure health care quality but i assume most of the criteria they use isn't relevant to very rare and complex cases like mine.

I'm editing this post because i remembered something that is very relevant and certainly makes you question what criteria they use to measure health care quality:

One of the things i'm diagnosed with is POTS, a type of Dysautonomia(damage of the autonomic nervous system). The first time this illness was mentioned in italian on the internet was in 2016 on the blog of a patient i know who does research on these things. 2 years have passed and the number of doctors in Italy who aware that this illness even exists is still extremely limited, while i know patients in the US that have been diagnosed with this decades ago and receive advanced treatments while nobody here in Italy will prescribe anything more than beta blockers, let alone try to dig in the potential causes of the illness. Even among the handful of doctors here who are ultra specialized and know about this illness, it's pretty much "yeah you have it here's a beta blocker" and it ends there. Meanwhile in the US there are entire clinics devoted to this illness.

I'm sure for people with more common illnesses italian healthcare is great but for people like me its very bad.

 
« Last Edit: April 20, 2018, 02:17:41 PM by Persistence »

use2betrix

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Re: Is there a way out for me?
« Reply #5 on: April 20, 2018, 02:05:26 PM »
I would like to hear your detailed plan how you think $30k will solve your problem here in the US. What city? What hospital? What doctor (name)? What specific care and testing will you get here, that you canít get there?

If youíre unable to work for a day, flying overseas will probably be as tolling if not worse.

I had about the most routine 1 hour surgery last year (hernia) and the cost was nearly $30k. I was in and out of the hospital in less than 5 hours.

Persistence

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Re: Is there a way out for me?
« Reply #6 on: April 20, 2018, 03:06:12 PM »
I would like to hear your detailed plan how you think $30k will solve your problem here in the US. What city? What hospital? What doctor (name)? What specific care and testing will you get here, that you canít get there?

If youíre unable to work for a day, flying overseas will probably be as tolling if not worse.

I had about the most routine 1 hour surgery last year (hernia) and the cost was nearly $30k. I was in and out of the hospital in less than 5 hours.

Center for Complex Diseases, David Lyon Kaufman, Mountain View, CA

Dr. Kaufman is part of the OMF research team https://www.omf.ngo/collaborative-research-center-stanford/

The 30k is for lab work(blood, urine, and microbiome testing), scans, dysautonomia testing, advanced nutritional evaluation with metabolomics testing and other gut tests(this is the most of what i can remember. Most of these things you can't do in Italy).
I won't be paying for treatments because if i did then i would need 300k instead of 30k. I can get the treatments paid for by the state when i come back to Italy.

Yes, flying overseas will take a huge toll but i don't have a choice.




Miss Piggy

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Re: Is there a way out for me?
« Reply #7 on: April 20, 2018, 03:19:25 PM »
Perhaps you need to go to a bigger hospital in Italy. I can't imagine that these basic tests are not available in the entire country. Or could your doctors not consult with the doctor in California in order to prevent you from having to travel and pay for these things on your own?

Slee_stack

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Re: Is there a way out for me?
« Reply #8 on: April 20, 2018, 03:40:32 PM »
The good news is that you can get most (if not all) of your needed analysis completed in Italy!  Even if you must consult Dr. Kaufman, I don't doubt he could be provided your test results for review and give you a recommendation. 
That way you avoid the strenuous trip (and associated costs) to the US!

More good news for you is that you seem capable of responding to posts here relatively quickly and coherently.  This opens up a world of options for telecommuting or contract work that you might use to establish a regular income.

This forum is filled with adept folk that have a wealth of knowledge and have been around the block a few times.  Folks here tend to have a higher attention to detail than might be typical on the internet.


Persistence

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Re: Is there a way out for me?
« Reply #9 on: April 23, 2018, 11:40:33 AM »
Sorry for the delayed reply, i haven't been able to do anything for the past 2 days.

Some of the things not available here include mast cell activation biomarkers, metabolomics, dysautonomia testing and some method to look at parasite dna in the gut. This is just off the top of my head but there's a lot more.

But it's not just about that. A big part is also interpreting the results.

"Or could your doctors not consult with the doctor in California in order to prevent you from having to travel and pay for these things on your own?"
"I don't doubt he could be provided your test results for review and give you a recommendation.  "

I know a patient who went to dr. Kaufman and his first visit lasted 3 hours and a half. He goes extremely indepth to try and figure out any possible cause for systemic illness. You can't just email him with your exams and symptoms and be like "yo tell me what to do", he would ask you to go to him like every other doctor, if you don't have money well that's too bad. It's harsh but it's the reality of the world we live in. Doctors like him only follow a few patients because they have to do so much work for each patient(for patients from the US there's also a lot of work to do with their insurances, applying for disability and so on) and in addition to that they are also researchers working in clinical trials and whatnot, they don't have the time to spend for every person emailing them with a ton of exams and a dozens of symptoms.  Granted, even if he was willing to do this he would still be very limited by the testing that isn't available here.

"More good news for you is that you seem capable of responding to posts here relatively quickly and coherently.  This opens up a world of options for telecommuting or contract work that you might use to establish a regular income."

Please do tell me what i could do to earn money. Keep in mind though that even for this kind of work after doing it for a day i have to at least recover for a couple days after. 



 

astralweeks

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Re: Is there a way out for me?
« Reply #10 on: April 23, 2018, 02:44:38 PM »
Hi.

I don't know how to help you make $30K, unfortunately. I hope some people here can help you come up with some low-energy side-hustles.

I do have very,very,very mild POTS, and I've had a host of other misc. health problems over the years, including various malabsorption syndromes, gut dysbiosis, gluten sensitivity, hashimoto's, joint hypermobility syndrome, etc.  I was looking into getting diagnosed with Ehlers-Danlos hypermobility type and exploring mast-cell activation disorders, but haven't followed up with it yet (decided to put that money elsewhere for the time being).

I know how frustrating it can be to have an invisible illness and systemic health problems that doctors are at a loss to solve.  It's great that you've found an advanced POTS/dysautonomia clinic that might be able to help you.

However, it seems like the $30K is going to be a long way off.  While you're working toward that goal, here's what I'd suggest.  Again, my situation is not like yours ó I am still able to work, have a relatively high quality of life, etc ó but I do know just enough about the world you describe to contribute some hopefully useful insight. (I apologize if you've already done all this research, but just in case...)

-- compression stockings, waist high.  They help keep the blood in your brain enough for you to think.
-- strength/resistance training while lying on your back.  Don't overdo it.  Look into core exercises.  The Mayo Clinic in the US (I think it's Mayo) has an exercise protocol that they give to POTS patients, and it's published around the web somewhere.
-- magnesium supplementation in a highly-digestible form.  If you can get some of the elite US brands shipped to you, all the better.  Try magnesium glycinate, which is easier to digest than magnesium citrate.  Thorne, Pure Encapsulations, Designs for Health -- all very good brands of supplements here (prescribed by functional medicine doctors).  Look up magnesium and POTS. Some anecdotal evidence there.
-- look into other supplementation -- DHA/Omega 3, a good multi-vitamin, perhaps iodine/selenium, vit D., and various other advanced suggestions.  Google till you find someone trustworthy.  Buy the expensive brands, and make sure any B-vitamins are "Methylfolated" (look it up)
-- go to an endocrinologist who can do advanced thyroid and hormone testing.  You may have done this already, I realize.  After my most recent flare-up, I realized the connection between my TSH (thyroid stimulating hormone) levels and tachycardia/dizziness.  My primary care doctor hadn't made that connection.  My TSH was only slightly elevated, but upping my thyroid levoxthyroxine helped tremendously.
-- as for the gut stuff, have you tried the GAPS diet (Gut and Psychology Syndrome)?  The English-language internet is full of good advice for that.  A more advanced version of that diet is called Autoimmune Paleo.  I'd highly recommend that you go fully grain, gluten, and dairy free for at least two months and see what happens.  My weight used to swing wildly (30 pounds in either direction) when I was having digestive problems.  Going gluten free and paleo really helped me, now going on 6 years of slowly feeling better.  It's not a cure-all, but it helped.
-- resist the urge to sleep all the time.  I know this is virtually impossible.  When I have flare-ups, it's so hard to even sit up straight, let alone walk around.  Do what you can.  Stay hydrated (but don't overhydrate, since that messes up your saline balance), and be gentle with yourself.

Again, I realize that you've probably done most of this research and may have by now more advanced solutions than those I'm suggesting.  The reason I'm listing these is to say -- you'll have to keep paving your own way in the meantime because it's going to take a very long time to get the money for this doctor.  Reach out to patients on the internet: What worked for other people who have been able to see this doctor?  What from their experience can you already integrate into your practice while you save money?

One more suggestion:  try writing/calling this doctor's medical center and seeing whether they have "out-of-pocket" pricing for people without insurance.  That may very well be $30K.  But perhaps they can work with you for a different price.  US healthcare is irrational like that.

Good luck to you.  I know it must feel like your life has been stolen from you.  The fact that you made it this far means that you're already taking it back.

mozar

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Re: Is there a way out for me?
« Reply #11 on: April 25, 2018, 10:48:33 AM »
Are there no specialists in the rest of Europe?  I've heard great things about German health care. That would be an easier place to go to. I would also look into Thailand and Japan. You're putting all your hopes into fancy american doctors. There has to be other options in the entire world without messing with the difficult healthcare system we have in the usa.
Ive heard that in Italy there aren't that many jobs, is there a convent you can join to move away from your family? You sound traumatized from how your parents have treated you. I recommend reading Feeling Good, the new mood therapy and the Body Keeps Score.
Once you improve your energy (you need energy to do anything ) you can move to another European country with better job prospects. You sound very smart but you have to stop thinking this one doctor is going to solve all your problems.

Letj

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Re: Is there a way out for me?
« Reply #12 on: April 26, 2018, 08:39:42 PM »
Am I the only one who thinks this is a scam? Just reading the OPs style of writing, he doesnít sound like English is his second language and certainly seems to have facility with the American way of speaking. I seriously doubt that no where in Italy or Western Europe has the expertise to help.

craiglepaige

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Re: Is there a way out for me?
« Reply #13 on: April 27, 2018, 07:36:30 AM »
Am I the only one who thinks this is a scam? Just reading the OPs style of writing, he doesnít sound like English is his second language and certainly seems to have facility with the American way of speaking. I seriously doubt that no where in Italy or Western Europe has the expertise to help.

I hate to be negative but I feel the same way. 

I've been living in the US since '93(was 13yo when I moved here) and grew up speaking Spanish. I have been speaking English for 20-21 years and to this day, Spanish still comes through in my speach and typing patterns.

To read these extremely well executed English posts is rather unusual since I can usually detect a Spanish speaking (Italian is a closed relative to it) person when I read their writing. I understand the OP mentioned being extremely intelligent but  the nuances of a language are not learned via intelligence, they are learned via using the language in a regular basis.

Sorry OP if I'm incorrect but this looks like a total scam to me..

Miss Piggy

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Re: Is there a way out for me?
« Reply #14 on: April 27, 2018, 07:59:58 AM »
Reading between the lines, I assumed almost everyone who replied to this thread had an inkling it was likely a scam but was trying to be at least a tiny bit helpful just in case.

use2betrix

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Re: Is there a way out for me?
« Reply #15 on: April 27, 2018, 08:17:56 AM »
Also agree my thoughts have been scam. Granted, I was surprised to get such a detailed response to the question I asked, still seems to be a scam though. Wonder how many identical posts have been made across other forums.

slappy

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Re: Is there a way out for me?
« Reply #16 on: April 27, 2018, 08:40:14 AM »
I didn't want to say it, but my thought was also scam. Or at least just a thinly disguised attempt to get people to donate.

Finallyunderstand

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Re: Is there a way out for me?
« Reply #17 on: April 27, 2018, 09:05:53 AM »
Am I the only one who thinks this is a scam? Just reading the OPs style of writing, he doesnít sound like English is his second language and certainly seems to have facility with the American way of speaking. I seriously doubt that no where in Italy or Western Europe has the expertise to help.

Was thinking the same thing.  And then when someone mentioned how quickly he was responding to posts (indicating he could do some sort of computer work) he decided to take two days to respond to the next post and said "sorry for the delay, I haven't been able to do anything for two days"

Villanelle

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Re: Is there a way out for me?
« Reply #18 on: April 27, 2018, 09:17:39 AM »
I too thought either "scam" or at best "attempt to get attention for a fundraising page under the guise of asking for advice". 

MrsDinero

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Re: Is there a way out for me?
« Reply #19 on: April 27, 2018, 10:12:17 AM »
I would like to hear your detailed plan how you think $30k will solve your problem here in the US. What city? What hospital? What doctor (name)? What specific care and testing will you get here, that you canít get there?

If youíre unable to work for a day, flying overseas will probably be as tolling if not worse.

I had about the most routine 1 hour surgery last year (hernia) and the cost was nearly $30k. I was in and out of the hospital in less than 5 hours.

The doctor you want to see will be in Italy in June 2018:

https://www.omf.ngo/end-mecfs-worldwide-tour/
« Last Edit: April 27, 2018, 10:15:56 AM by MrsDinero »

mozar

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Re: Is there a way out for me?
« Reply #20 on: April 27, 2018, 11:33:15 AM »
Fwiw i thought this person was attempting to scam and also needs help. Some scammers are novices and not in a good place in life.

Persistence

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Re: Is there a way out for me?
« Reply #21 on: April 27, 2018, 11:53:19 AM »
So here i am again...

Sometimes i reply quickly to posts and sometimes it takes a lot more time (have to rest/recover, can't think about what to type etc), i do my best.

I feel so bad every time i read comments of people thinking i'm scamming or all around being very skeptical. I should be used to it by now and most people would have given up but i don't want to and it feels worse every time because i don't know what to do to give the proper impression, i fail every time.

On one hand, i try my best to give the impression of a capable person, because i know that successful people would only help someone they deem worth to help, so someone who has the potential to be successful himself, that way they would see it more as an "investment" than a handout. You know, the whole "Give a man a fish, and you feed him for a day. Teach a man to fish, and you feed him for a lifetime."

For this reason i try my absolute best, i often spend many hours on a single message to make sure it looks as good as possible in the hopes that someone helps me. This message for example, from 5 pm to 7.45 pm. I also try to respond in the most comprehensive and coherent way when people are skeptical for the same reason.

But it always backfires because i guess it "looks too good to be true" and so on(or maybe the problem is something else, i have no clue and i can't read people's minds). "if you really had cognitive problems you wouldn't be able to write like this" ignoring the fact that it took me 3 hours.

But if i don't, people will probably think i'm not worth their time and there is no value in helping me. "you could at least have put more effort if you expect people to help you". "why should i help you and not someone else?" and i don't know whatever else. I don't know, maybe it wouldn't be so bad but it just feels wrong to not try my best when my life is on the line, like when else would i try my best if not when my life is on the line?? And why wouldn't i do it always, anyway? I try my best to give an accurate view of what my situation is like. I doubt an half assed post would get me anywhere.   

It's a lose lose situation because no matter what i do people will be skeptical and think i'm scamming. You think that if i really was scamming i wouldn't be able to misstype a bunch of stuff and make it look like i'm not fluent? But then again even if i was why would i do that? Why would anyone want to help a person from a first world country who studied english since elementary school and doesn't even know how to type in proper english? I'm 22 years old i'm not 15...

I'm so fucking desperate i don't know how to get someone to help me. I'm trying my best but it seems like it's not enough. No matter how much i try to refine my approach people always find something to nitpick and think it's a scam.

Someone mentioned something like "i wonder how many posts like this are copy pasted in other forums". You can try using an advanced searching algorithm and i assure you won't find any.

My english is really good because i took the time to learn it when i was younger and spent a lot of time online. If you want me to go in depth i used to play wow arena with EU people chatting for hours after we stopped(and during queue times). I played mostly with swedish people(the server i was on had a very high swedish population), this was 7 years ago and to this day people tell me my accent sounds like i'm from sweden.
I also used to watch a lot of english content on youtube/twitch until a few years ago(the ratio of english to italian content is probably like 10 to 1). Do you want me to type my entire life story here? Do you want to talk to me on discord or something so i can prove that i'm italian?? Do i have to show my ID? I mean i'll do it if i have to...

Alternatively, if nobody wanted to help me directly i would also be fine with making the money myself but if it takes me 3 hours to type a message like this i doubt i can make 30k in a short time with no qualifications. Still, i asked and nobody told me what to do.

@MrsDinero i asked an omf correspondent i know and he said Kaufman will not be there. The worldwide tour is about information/activism.

Freedom2016

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Re: Is there a way out for me?
« Reply #22 on: April 27, 2018, 12:08:22 PM »

@MrsDinero i asked an omf correspondent i know and he said Kaufman will not be there. The worldwide tour is about information/activism.

You would be a fool not to go. You'll meet others in Italy who are dealing with similar illnesses and can share resources and ideas. And you may be able to network your way to the physician you are hoping to see; you can certainly learn more directly from an organization focusing on your illness about options that may be feasible for you.

Persistence

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Re: Is there a way out for me?
« Reply #23 on: April 27, 2018, 01:29:39 PM »

@MrsDinero i asked an omf correspondent i know and he said Kaufman will not be there. The worldwide tour is about information/activism.

You would be a fool not to go. You'll meet others in Italy who are dealing with similar illnesses and can share resources and ideas. And you may be able to network your way to the physician you are hoping to see; you can certainly learn more directly from an organization focusing on your illness about options that may be feasible for you.

I'm already in contact with those people, the internet is a thing you know. I'm in contact with both patients and the italian associations. Said associations are good for solidarity and so on but almost nobody gets better(most patients are mild to begin with and have very little to do with me as well symptoms wise). The people who got better went to doctors in other countries and had to spend a ton of money. I already went to the doctors suggested by the associations and they weren't able to help me or put the pieces together.  The last doctor they recommended and i went to asked me no new exams and wrote "i hypothesize me/cfs".
 
I'm forced to explain what me/cfs is because otherwise this won't make sense. It's an illness with no diagnostic test that is essentially a group of symptoms. If you go in depth you can find causes for it and get better with treatment. Italian doctors are not capable/willing to do that, they just say well me/cfs there is no cure/they don't know what to do or say. Nevermind that me/cfs has nothing to do with my 14 bmi and many other symptoms(or the fact that i keep getting worse while the vast majority are stable or have ups and downs, i haven't had an up since i got ill). I know patients that were diagnosed with me/cfs by italian me/cfs doctors a decade ago and spent years in misery only to go abroad and it turned out they actually had something else that improves with treatment.

The best italian me/cfs specialist (who i won't name in the very small chance he decides to sue for slander) takes 400 euros for a 10 MINUTE visit where he barely even look at your exams and nowadays only prescribes ozone therapy which is pretty much quack BS(it can work on a very small number on patients but he makes it sound like it will help everyone. It's not scientifically proven at all - you also have to pay it completely out of pocket for that reason since the state won't pay for treatments that aren't scientifically proven). His office is completely covered in pictures of when he went on television on Maurizio Costanzo show, i guess the guy is like a narcissist or something.

This is the guy who will be meeting the omf people and will be greeted as the "top italian expert" by them.

I don't see a way to change how things are here short of outright exposing these people, which will surely get me hated by everyone and publicly shamed for nothing. If they cared about learning from US specialists they would do it themselves.

As for networking, the omf spends all their money on research i'm pretty sure it would be impossible to get them to pay for my costs.

mozar

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Re: Is there a way out for me?
« Reply #24 on: April 27, 2018, 05:58:43 PM »
Quote
Still, i asked and nobody told me what to do.

We've given you suggestions but we can't tell you exactly what to do, because we don't know. You have to do what everyone else does, which is go from doctor to doctor until you get the right treatment. It took me ten years just to get a diagnosis of low blood pressure. If you want, since this is a financial site, you can lay out all your costs of what it would take to see Dr Kaufman and we can help you figure out to save money. This forum says that you can get one of the tests done in Germany http://forums.phoenixrising.me/index.php?threads/just-had-first-appt-with-dr-kaufman.52903/
which is closer to you.
Have you tried the Health Risingís Monthly Ask the Chronic Fatigue Syndrome and Fibromyalgia Experts Panel?
https://www.healthrising.org/chronic-fatigue-syndrome-mecfs-doctor-resource-center/ask-mecfs-fibromyalgia-expert-panel/
Dr Myhill is in Wales which is also closer to you.

Persistence

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Re: Is there a way out for me?
« Reply #25 on: April 28, 2018, 10:04:44 AM »
Quote
Still, i asked and nobody told me what to do.

We've given you suggestions but we can't tell you exactly what to do, because we don't know. You have to do what everyone else does, which is go from doctor to doctor until you get the right treatment. It took me ten years just to get a diagnosis of low blood pressure. If you want, since this is a financial site, you can lay out all your costs of what it would take to see Dr Kaufman and we can help you figure out to save money. This forum says that you can get one of the tests done in Germany http://forums.phoenixrising.me/index.php?threads/just-had-first-appt-with-dr-kaufman.52903/
which is closer to you.
Have you tried the Health Risingís Monthly Ask the Chronic Fatigue Syndrome and Fibromyalgia Experts Panel?
https://www.healthrising.org/chronic-fatigue-syndrome-mecfs-doctor-resource-center/ask-mecfs-fibromyalgia-expert-panel/
Dr Myhill is in Wales which is also closer to you.

http://www.drmyhill.co.uk/wiki/Main_Page --> Update on patient access to Dr Myhill - April 2018

Please note that due to Dr Myhillís extremely heavy workload the following policies will still apply:

1.No new patient consultations are currently being accepted.

Last i heard she had a 1 year wait time, now she doesn't accept new patients at all.

Also, i think people are getting the impression that if i go to a european doctor i don't have to pay? It will be less than 30k but i'll still have to pay a ton of money i don't have.

The CellTrend tests can be useful but are a small piece of the puzzle.
« Last Edit: April 28, 2018, 10:07:02 AM by Persistence »

mozar

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Re: Is there a way out for me?
« Reply #26 on: April 28, 2018, 10:37:46 AM »
You're doing all or nothing thinking, i.e. I have to see them now, or never. You could've gotten on the waitlist and now it's too late.

Quote
Also, i think people are getting the impression that if i go to a european doctor i don't have to pay? It will be less than 30k but i'll still have to pay a ton of money i don't have.

People don't have the impression that you won't have to pay, but that you would be able to pay less, which would be an easier goal. Same all or nothing thinking i.e. someone has to give me 30k or forget about it.
It would be cheaper and less exhausting for you if you went somewhere in Europe.

I sympathize because I used to think similar to that. It's common for people who grow up in emotional abusive households, which is why I suggested getting away from your family.

I highly recommend the book "Feeling Good, the New Mood Therapy"

I know it's frustrating that you thought coming to this website someone was going to tell you how to get 30k, and all you get is a book suggestion. But we are trying to give you the tools to solve your own problems. This website isn't a get rich quick or make money quick site.

Persistence

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Re: Is there a way out for me?
« Reply #27 on: April 28, 2018, 11:58:49 AM »
You're doing all or nothing thinking, i.e. I have to see them now, or never. You could've gotten on the waitlist and now it's too late.

Quote
Also, i think people are getting the impression that if i go to a european doctor i don't have to pay? It will be less than 30k but i'll still have to pay a ton of money i don't have.

People don't have the impression that you won't have to pay, but that you would be able to pay less, which would be an easier goal. Same all or nothing thinking i.e. someone has to give me 30k or forget about it.
It would be cheaper and less exhausting for you if you went somewhere in Europe.

I sympathize because I used to think similar to that. It's common for people who grow up in emotional abusive households, which is why I suggested getting away from your family.

I highly recommend the book "Feeling Good, the New Mood Therapy"

I know it's frustrating that you thought coming to this website someone was going to tell you how to get 30k, and all you get is a book suggestion. But we are trying to give you the tools to solve your own problems. This website isn't a get rich quick or make money quick site.

It has nothing to do with all or nothing or forget about it. I keep getting worse and can't wait 1 year for a doctor that will focus mainly on mithocondria where my problem could be and probably is somewhere else(i've already tried a bunch of stuff for mithocondria and got no benefit at all). On top of this, even though it costs less i still don't have the money. One year ago i was able to function at 3x what i can now. I'm in a hurry... 

Dr. Myhill isn't the only one in europe, there is also another guy i won't name who until a couple of years ago relied on very dubious lyme tests from private companies and false diagnosed patients with lyme and proceeded to ruin them completely with high dose antibiotics for years, telling them to endure when it turns out they didn't have lyme. I'm sorry but i don't trust such doctors.   

I have my reasons for wanting to go to dr. Kaufman. I didn't think i would have to explain everything in detail like this but i guess i'm doing it.

I'm working on making a video where i show my ID, exams, dr letters and so on. I'm tired of getting accused of scamming (someone even told me they wanted to report me to the FBI for charity scam lol...). I understand people have reasons for being skeptical and there are many assholes who ruin it for people like me so i'll just provide proof. I don't know if its sensible to put all my personal info on the internet like this but i don't have a choice.
« Last Edit: April 29, 2018, 05:29:02 AM by Persistence »

civil4life

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Re: Is there a way out for me?
« Reply #28 on: April 28, 2018, 12:48:01 PM »
To me it seems like you have done a significant amount of research about your potential issues etc.

Is the $30k a solid number?  Did you get some sort of estimate of expenses?  How long will you need to be in the US?  Once you make the money how long will it be until you can schedule an appt. with the specialist?  Many of these specialist have liaisons that help with setting all of these things up?  Have you reached out to them?  I do not know what other kind of aid organizations might be out there to reach out too for financial assistance?  Are there specific medical organizations related to your illnesses.  Many of them provide assistance with these types of things.  My dad had leukemia.  THe leukemia and lymphoma society was able to assist with some funds, but also travel to and from treatment and copays for medication.

You did not go much into your family other than they did not raise you to think of money.  Are they able/willing to help with fundraising?

*Fundraising

Try to post on more than one crowdfunding site.
Sell some of your stuff.

I am not sure how credit cards etc work in Italy.  Do they have travel rewards credit cards?  I am guessing you do not have the credit, but again would any family members be able to get one and earn the points?

Checking out AirBnB for housing.  I am sure in that area there would be a substantial amount of options.  The hospital or organizations in the area may have sponsored housing?  In the US there is Ronald McDonald houses but those are primarily for the families of sick children.

Additionally some people are more willing to donate gift cards.  So maybe ones for a specific airline, lodging location, and various restaurants etc. to cut even more travel expenses.

Is any of the lab work and tests available in Italy?  Can your blood or samples be sent for testing.  Is it possible to get what you can ahead of time before going to the US?

I am guessing the only work you would be capable of doing would be online.  Can you do coding or other computer work?  Maybe look into drop shipping.  Or finding a job translating or proofreading.  Many companies will pay people to do online research, data entry, transcribing, etc.

Hopefully some of these ideas help.

I know you did not what this, but still I do wish you good luck in finding a solution.

mozar

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Re: Is there a way out for me?
« Reply #29 on: April 28, 2018, 12:59:00 PM »
Quote
I'm in a hurry... 

Like I said before there is no quick solution.

Instead of putting all your info on here, you should send it the expert panel I told you about.

Letj

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Re: Is there a way out for me?
« Reply #30 on: April 28, 2018, 01:40:12 PM »
Reading between the lines, I assumed almost everyone who replied to this thread had an inkling it was likely a scam but was trying to be at least a tiny bit helpful just in case.

I agree and I think thatís reflected in the fact that he received practically nothing in donation. People need to be real careful especially with all the online scams, particularly the Nigerians ones, coming out of Internet cafes.

Cranky

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Re: Is there a way out for me?
« Reply #31 on: April 28, 2018, 04:25:17 PM »
Itís confusing to me because I had a student with POTS 10 years ago, and her medical treatment wasnít anything major. I wouldnít count on traveling to see a particular doctor and having some sort of breakthrough.
« Last Edit: April 29, 2018, 06:33:29 AM by Cranky »

lhamo

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Re: Is there a way out for me?
« Reply #32 on: April 28, 2018, 04:58:58 PM »
Unfortunately, I think it is highly unlikely that random people on the internet are going to give you 30k to pursue diagnosis in the US. 

I would focus your limited energy on networking with specialists in the field, starting with the Italian specialists, who may take an interest in the specifics of your case from a medical standpoint and be willing to help you network with US specialists to see if there are clinical trials, etc. you can participate in to refine your diagnosis and treatment plan.

Quick google turned up this guy, who had published research back in 1998/99 on POTS:

https://www.hunimed.eu/professors/raffaello-furlan/

He also spent time at the Vanderbilt Autonomic Dysfunction Center in the US, which seems legit.

MrsDinero

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Re: Is there a way out for me?
« Reply #33 on: April 28, 2018, 06:33:19 PM »
After reading everything, I'm going to say troll.  It seems like more of these are popping up on this site.  Maybe we can create a new forum category for these threads?

lbonga1

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Re: Is there a way out for me?
« Reply #34 on: April 28, 2018, 07:44:10 PM »
On the chance that this is not a scam, I thought I'd give a little of my thoughts. Another poster above mentioned Ehlers-Danlos Syndrome, and that was the first thing that came to mind when I read of your symptoms as well. I also have EDS, and I wanted to mention that there are many support groups on Facebook. I'm sure they are not just limited to the US, so maybe you can find someone in Europe that has recommendations. I know it takes a lot of people a long time to be diagnosed with EDS because it is not well understood and also difficult to diagnose. But I think it would be worth it to try to locate a doctor in Europe that is knowledgeable in EDS and related connective tissue disorders.

cl_noll

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Re: Is there a way out for me?
« Reply #35 on: April 28, 2018, 08:21:27 PM »
Have you tried taking antibiotics to see if they have an effect? Specifically something like doxycycline in combination with erythromycin?

At one point I ordered veterinary antibiotics online when I wasn't feeling well for an extended period of time and the Dr that I saw didn't think to prescribe them. Within two days I did a complete turnaround in terms of symptoms (fatigue, joint ache, fog, etc) it was pretty enlightening, and only cost about $40. Even if it doesn't lead to a "cure", it could certainly point you in the right direction if you experience a positive outcome, potentially saving yourself from subjecting yourself to a full battery expensive tests.

While I can't say that I recommend anyone else do this, I don't think it was particularly risky either, considering teenagers get antibiotics prescribed for acne.

Persistence

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Re: Is there a way out for me?
« Reply #36 on: April 29, 2018, 01:51:09 PM »
Reading between the lines, I assumed almost everyone who replied to this thread had an inkling it was likely a scam but was trying to be at least a tiny bit helpful just in case.

I agree and I think thatís reflected in the fact that he received practically nothing in donation. People need to be real careful especially with all the online scams, particularly the Nigerians ones, coming out of Internet cafes.

I made a video where i show my ID, doctor letters and exams. I added it to the fundraiser page.

@civil4life Thanks for the detailed response, i can't reply to everything in depth right now(can reply to some). The waiting time is 2-3 months, the estimates are from talking to other patients who went to see him. The expenses vary and there is no way to get a precise number but 30k is the lowest estimate, any lower and it wouldn't be a solid number. The initial testing should be something like 15-20k, then based on the results it could either be that i live there for a while trying cheap treatments/supplements and doing followup testing to understand things better, or go back to Italy and send the blood there in the future(some exams require liquid nitrogen transportation of the blood..), either way i will need another 5-10k for the followup. Rest is living/traveling expenses. I haven't figured out where to live there etc because i have a very little energy and there's no point looking this stuff up if i don't get the money to go there anyway(in addition to this i also know a patient there that got a lot better and she is willing to help me figure out where to live etc). If someone decides to help me out and i can book the visit i then have 2-3 months to figure this stuff out, plenty of time. Unfortunately there are no health associations that are willing to help me.

@mozar i doubt the expert panel is still a thing, they havent answered since 2015. I emailed Cort to ask him about it, i'll let you know when he responds

@Cranky there are different kinds of POTS and some people are so severe they can't even sit in a wheelchair(fortunately i'm not that severe but still housebound).

@lhamo There are no clinical trials aside from the severely ill big data study which is about gathering data and not treatment(which could actually be useful for me). I would have to live long term in the US for it, pretty hard to do with no money. There is no point networking with italian specialists because they are not in contact with the US ones.

I know Raffaello Furlan, he treats POTS symptomatically and tells patients to exercise because he doesn't know/care about me/cfs, he doesn't try to look for the root cause (my problem is a lot more than POTS in case it wasn't clear).

@lbonga1 I don't have EDS.

@cl_noll I haven't but i was given a ton of antibiotics when i was younger. It's a bad idea to shoot blindly when a patient is as severe as i am unless you have no other choice.
   
« Last Edit: April 29, 2018, 02:01:46 PM by Persistence »

Villanelle

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Re: Is there a way out for me?
« Reply #37 on: April 30, 2018, 05:04:49 AM »
Don't you think that if there was an easy path to $30k that everyone would be doing it? It seems like that's what you want--a magic answer to a $30k question, but of course that doesn't exist.  Or perhaps that what you want is for people to give you $30k but you know that won't be received well so instead of asking directly, you hide that in a request for "information and advice" and hope people will see hopelessness in your situation--or will see that hopelessness once you reject any other solution or suggestion, and will default to giving.

Your situation, as presented, sucks. But none of us can tell you how to easily make $30k quickly and with a lot of limitations.  You seem to have one specific path on which you are very set, and you can't afford that path.  Like so many things in life, that creates some unfortunate tension and leads to tough choices.  I wish you luck. 

Chairman

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Re: Is there a way out for me?
« Reply #38 on: May 17, 2018, 08:38:10 AM »
Color me skeptical.