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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Hospital

Shoshana

Northern USA
Messages
6,035
Location
Northern USA
I'm also scared to go to another doctor and be dismissed, or be misdiagnosed and given a treatment that makes things even worse. I've lost confidence that doctors have any clue what I'm dealing with, but I don't really either.

How do I get out of this cycle?

This makes total sense to me, that we feel this way. It is an awful situation!

And not any of our faults. No one would choose this.
We do not know how to solve it, and the doctors we go to, don't seem to either.
We need help but are validly leary of being treated poorly, and given things that make us even worse.

I wish I knew how to get us all out of it.
Perhaps we need to do the best we can, with the doctors we can find, and bolster each other, the best we can, and hope for research breakthroughs.
 

Shoshana

Northern USA
Messages
6,035
Location
Northern USA
But then I worry they will just dismiss it all as anxiety.

Even if/when we do have anxiety, our illnesses should not be dismissed as SOLELY that,
and WE should not be dismissed.....

and we should NOT be treated, as if our anxiety is our fault and imaginary, or the cause of all our difficulties.
That we shouldn't have it. And we could get rid of it, by just wishing it was gone.

And we should not feel we must hide it, if we have anxiety, because they will then not listen to our symptoms.
And we should NOT feel guilty if we are depressed OR have anxiety.

People with other illnesses have anxiety too.

Most humans do.

If we have anxiety in addition to an illness, it is most often ,
either being caused BY the illness, or by not having the help we need with the illnesses we have,
OR, it is a NORMAL response to a confusing untreated scary illness and to the lack of proper respect, treatments, and help, and by having lost our own abilities but still expected by others, to "handle our stressors better" than we do. That would give any sensible person some anxiety!

No one would handle these stresses, perfectly.
And few could handle them with no anxiety.

Regardless what the cause of anxiety, I don't think people should be dismissed for it, or blamed for it,
or have their other ailments overlooked and left UN-investigated and untreated.

(Btw, is "UN-investigated" a proper word? :D )
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I keep thinking if i go to one of the good hospitals here (ny/nj) maybe they can help me. Im so weak, dizzy, heart races, cannot eat.
But then I worry they will just dismiss it all as anxiety.
Has anyone gone to the hospital or Er for cfs and actually gotten help?
The problem with telling them you have ME/CFS is there is no official treatment for it that insurance will pay for.

It is far better if you have something else. Listing your symptoms as specifically as possible is important, then getting good testing that identifies things that are treatable is important. Many of us have things that can be treated.

Seeing an ME/CFS specialist is the most helpful. Looking into dysautonomia is helpful, too. Maybe mast cell activation? Infections like Epstein Barr, cytomegalovirus, HHV6, 7, 8, HSV1, 2, Parvovirus, etc.? Have you been tested for weird autoimmune antibodies? Any doctor who's willing can test you.

Its possible you may find the attached helpful.
 

Attachments

  • POTS adrenergic antibodies.pdf
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  • POTS MCAS IVIG LDN.pdf
    823 KB · Views: 3

Pink

Senior Member
Messages
574
Location
Tri state area
Thank u so much all for the replies.
I heard of dysautonima and wondered if it applied to me, or maybe its lack of nutrition i dont know. (My gastro issued are flaring up but my insurance wont cover testing and I can't afford another endoscopy or gastric emptying test.)
My Dr recommended a dysautonima specialist in Nyc, and sent in paperwork but after a few weeks they replied that I need to see a reg neurologist.
Yes I have anxiety, but I never tell any Dr bec once they hear it, that's it. All else is void and ignored.
I was tested for some viruses, that showed old infections, none current.
 

Diwi9

Administrator
Messages
1,780
Location
USA
Thank u so much all for the replies.
I heard of dysautonima and wondered if it applied to me, or maybe its lack of nutrition i dont know. (My gastro issued are flaring up but my insurance wont cover testing and I can't afford another endoscopy or gastric emptying test.)
My Dr recommended a dysautonima specialist in Nyc, and sent in paperwork but after a few weeks they replied that I need to see a reg neurologist.
Yes I have anxiety, but I never tell any Dr bec once they hear it, that's it. All else is void and ignored.
I was tested for some viruses, that showed old infections, none current.
You need to see another ME/CFS specialist, I don't think your test results would be so dismissed. I have very positive experiences with specialists in CA. I'm sorry this has happened to you. It took me seven years to be diagnosed...I stopped going to doctors at year three when I had a very negative experience. It can take time to find and get in with appropriate care...it shouldn't be so, but it is. Just believe to your core that you are 100% worth it, above and beyond the status of someone else's medical degree.
 

Pink

Senior Member
Messages
574
Location
Tri state area
@Diwi9 I saw Dr enlander in NYC. Many ppl say he is amazing for cfs.
he claimed to me he can cure it .
After what he and his office put me thru, I'm very put off. It was a nightmare experience.
I do wish I had the time, money and strength to go to california for treatment but I dont.
 

jesse's mom

Senior Member
Messages
6,795
Location
Alabama USA
@Diwi9 I saw Dr enlander in NYC. Many ppl say he is amazing for cfs.
he claimed to me he can cure it .
After what he and his office put me thru, I'm very put off. It was a nightmare experience.
I do wish I had the time, money and strength to go to california for treatment but I dont.


we need more than a like button, we need sad, angry nad such
 

Diwi9

Administrator
Messages
1,780
Location
USA
@Diwi9 I saw Dr enlander in NYC. Many ppl say he is amazing for cfs.
he claimed to me he can cure it .
After what he and his office put me thru, I'm very put off. It was a nightmare experience.
I do wish I had the time, money and strength to go to california for treatment but I dont.
Yes, we spoke about this on a prior thread. I don't know much about Dr. Enlander, I just know that I have been treated with respect at the Center for Complex Diseases...and been cared for with diligence. Money and energy are a big obstacle and I wish it weren't so, but we have limited options. I can't overcome those difficulties for you...all I can offer is that there is help and not everyone would be so dismissive. There is something wrong with you and while there are not complete treatments, there are doctors who understand more than others. I so wish that you did not have to struggle as you have and would have had a better experience with a ME/CFS specialist...it takes so long to get in, then to have a bad experience is very difficult.
 

Pink

Senior Member
Messages
574
Location
Tri state area
Thank u, @Diwi9
It's sad but I'm used to my medical issues being marginalized. (I think I maybe mentioned elsewhere) that I was very sick while pregnant and so many Drs dismissed my concerns. I think the lack of proper medical care then might be a contributing factor to my current cfs.
 

Diwi9

Administrator
Messages
1,780
Location
USA
Thank u, @Diwi9
It's sad but I'm used to my medical issues being marginalized. (I think I maybe mentioned elsewhere) that I was very sick while pregnant and so many Drs dismissed my concerns. I think the lack of proper medical care then might be a contributing factor to my current cfs.
The problems then are two-fold. Part one...doctors are not prepared to deal with complicated cases. Part two...your maltreatment has you in an extraordinary bad state of affairs with your expectations of medical professionals. The sad part is, I don't think you are alone, this is quite common for people with ME/CFS. No matter how someone treats you in their position of authority...it doesn't mean you are any less...it means they are too ignorant or cowardly to look you in the eye and give you compassion because they can't be in command of what is happening in your body. This position cannot help your physical health, but it can help your perspective. Doctors are too empowered in our society, just as politicians are...these are professions that are intended to be in service of others. If you are not being served, they are not doing their jobs.
 

Pink

Senior Member
Messages
574
Location
Tri state area
Tried John Hopkins (about Dr rowe) but he only sees pediatric patients & has not accepted new ones in 15 yrs.
They recommended Cleveland clinic or university of Michigan.
Both of those websites discuss managing cfs with exercise, therapy etc. "Don't just sit around and rest, try to walk a mile each day. " "The Dr is only 10% of treatment, the rest is up to you. " (can u imagine telling that to a cancer patient)
Are you kidding me?! Gentle yoga, or grocery shopping , or Even cooking supper leave me with Pem.
Some days just sitting up makes me dizzy and gasp for breath.
Does any dr really understand this condition?!
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Yes, there are doctors who do.

It is best to see a top specialist. However, given the difficulty of that for many of us, Its best you get as much testing done locally, so once you do see one, they'll be best able to help you.

Testing that is readily available from LabCorp or Quest Diagnostics might include:
  • CBC and CMP
  • Complete testing of all adrenal, thyroid and sex hormones
  • Deficiencies of amino acids, carnitine, iron, folate, B12, and vitamin D
  • Homocysteine
  • Minerals/electrolytes
  • Herpes family viruses - not only IgM, but IgG, IgA, and PCR
  • Other viruses that you may have been exposed to
  • Atypical pneumonias - chlamydia, mycoplasma, IgA and IgG
  • Immunoglobulins, with subclasses
  • T cell and B cell panels, inc NK cells
  • Sed rate
  • Coagulation markers
  • MCAS markers - Chromagranin A, Prostaglandin D2, tryptase, histamine
  • Antibody testing
  • SIBO test and stool test
  • Heavy metal testing
  • Dysautonomia testing (if you have symptoms)
Who knows? Someone might find something they know how to treat. There are many other tests, but those above have been done by many of us.
 

Pink

Senior Member
Messages
574
Location
Tri state area
Thanks @Learner1 , I was tested for some. I spoke to my Dr about testing for mold toxicity and some other viruses but my insurance doesn't cover it. And she's reluctant to order so many blood tests that are unusual.
I went to an infectious disease Dr a while ago to ask about less common infections. She laughed me out of the office. Said of course there's a whole book of diseases but there's no point in testing for everything. Get on a bike, ride 3 miles a day and u will be fine.
 

Pink

Senior Member
Messages
574
Location
Tri state area
I do see that I have consistent markers for inflammation in bloodwork and stool tests. (High secretory iga, high eosinophils, high sed rate, high ige serum).
No one seems to know why. The gastro said maybe it's allergies , the reg Dr is puzzled, the functional medicine Dr was also.
I did have milk the night before my last blood test, Even though I have a mild dairy allergy. Maybe that was it? No one seems to know.
Strange....
 

E.man

Senior Member
Messages
196
Location
Bega Valley , Australia
we need more than a like button, we need sad, angry nad such
I started a thread asking for it and the answer was that someone has to volunteer to do it.

Back on topic. I've been to hospital with a flare up to new levels with new symptoms. Even when most of the medics are ok with ME they won't do any more than treat for acute problems.
If you need help with acute situation then go.
 
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