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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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Finding Doctors to Try Treatments?

purrsian

purrsian

Senior Member
Messages
344
I've been reading lots on these forums lately and one thing that struck me is that so many people seem to be on all different types of fancy medications, protocols or other treatments. There are many categories in the treatment part of the forum, none of which I've ever had a doctor discuss with me. So far, in my ten years of being sick, I've only ever had doctors discuss supplement type therapy (B12 injections, tablets for various things my bloods are deficient in like iron and magnesium), antidepressants and psychological therapy, and more recently, GET. I've had doctors say "I don't know what else we can do for you" when I've complained about worsening or continual symptoms.

My most recent doctor seemed good at first, but then she's been so hung up on treating my POTS and sinus type issues that it's hard to talk to her about fatigue. Also she mentioned about the fatigue having possible psychological causes (noooope!) and then the next session, was trying to convince me that GET would be beneficial. So now I'm going to try a new doctor!

Have you tried any other types of treatments? Did doctors prescribe it, or are some of them from natural medicine practitioners? If your doctor prescribed, did they suggest it or did you have to prompt them about it? Did you have to 'shop around' to find a doctor willing to try things?
 
T

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
purrsian said:
I've had doctors say "I don't know what else we can do for you" when I've complained about worsening or continual symptoms.
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This is cause you are not seeing a dr who specialises in ME/CFS with the experience to really help you. Doctors who do not specialise dont have the knowledge to be able to help.

My most recent doctor seemed good at first, but then she's been so hung up on treating my POTS and sinus type issues that it's hard to talk to her about fatigue. Also she mentioned about the fatigue having possible psychological causes (noooope!) and then the next session, was trying to convince me that GET would be beneficial.
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exercise usually is good for POTS patients, that is if they dont have ME!! When POTS has been caused by ME and ME is made worst if you over do things.. exercise can not so good in this case for POTS.

The POTS should be treated in other ways instead and not making you exercise if that makes you unwell.



So now I'm going to try a new doctor!
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Speak to other people in your local who have ME/CFS like you and look for a dr who is helping them. Dont try to just randomly find a doctor. I went through 30 different doctors randomly looking before I found out there are ones which actually specialise in our illness due to this it took me 10 years to find a good dr with this

I finally got an okay one after contacting my local ME/CFS society to ask recommendations. Even if you do find a decent dr, in my own experience they will often want one to be under a ME/CFS specialist anyway. (my last two drs wouldnt take me on unless I was.. the worst a person is, the more likely the dr will want a ME/CFS specialist involved for guidence).

Be aware that to my experience there are three different kinds of ME/CFS doctors so its important to even find out about the ME/CFS specialist someone may refer you to.

Those who believe we are all psych patients (this is the norm in the UK). These have their only interest in treating people with GET and CBT and anti-depressants.

Those who treat ME/CFS by just focusing only on symptom treatment without trying to work out the whys of the person having those symptoms. (In this case many of the coexisting issues etc may be missed and left untreated)

Thirdly those who are willing to not only treat our symptoms but actually go deeper with things and work on trying to find our individual abnormalities with this to treat eg look for things such as gene mutations eg MTHFR . Some of these are also willing to do even at times experimental treatments. Most of these ones will trial supplements and other things with their patients based on test findings eg my specialist even got me to have hair testing done for other deficiencies though he was a proper medical dr.

If you have a ME/CFS specialist, they will guide you in what to try. Experienced ones often have lots of ideas and know what has and hasnt worked for others. After one has got oneself as best as one can with one ME/CFS specialist (the dr may spend up to a couple of years working with you on trialing things), it can then be helpful to look for another as Ive found they usuallly have their own areas of specialities around ME/CFS.

i had 3 different ME/CFS specialists at once, each focused on different things.. one on my POTS, one on my gene mutation, and then another focused on my insulin and food issues. Find out whatever ME/CFS specialist you plan to see what areas in this are his interests (others may be more viral and immune system focused and like to try to find issues in this area and give out antivirals to many of their ME/CFS patients).

In your case you will need to find one familiar too with POTS in ME/CFS patients if you have been diagnosed with that.
 
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Keela Too

Keela Too

Sally Burch
Messages
900
Location
N.Ireland
Sadly it seems it is a lottery and there is a load of luck involved in who you end up seeing.

In the UK, NHS GPs really seem to have their hands tied.

Here in N.Ireland (part of UK) there are no NHS specialists, and no clinics to which GPs can refer their ME patients. What individual GPs do is variable, but most look at the NICE guidelines and suggest CBT, GET and anti-depressants. All of which I've been offered but declined and then changed to another GP who we found via personal social networks - ie a Dr who knew the "old me" before ME! It is still limited what this Dr can do, but at least there is support and belief there now.

I am fortunate to also see a specialist privately, and this has helped.
 
frog_in_the_fog

frog_in_the_fog

Test Subject
Messages
253
Location
California
Finding a doctor that can actually help you is like going on a quest for the holy grail. It took me over ten years to finally get somewhere. If the results of recent research are any indication, we might have some serious advances in the next few years, that will make it easier to get a positive me/cfs diagnosis.

Doctors tend to go for the low-hanging fruit, they will treat your easy symptoms first. Getting to the real underlying condition is a whole lot harder with many of us still in the dark.
 
purrsian

purrsian

Senior Member
Messages
344
taniaaust1 said:
exercise usually is good for POTS patients, that is if they dont have ME!! When POTS has been caused by ME and ME is made worst if you over do things.. exercise can not so good in this case for POTS.

The POTS should be treated in other ways instead and not making you exercise if that makes you unwell.
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She was actually trying to prescribe it for the CFS, not POTS o_O

taniaaust1 said:
I finally got an okay one after contacting my local ME/CFS society to ask recommendations.
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This is a great idea, I hadn't thought about it. Thanks for the rest of your advice too. I'm honestly not sure if there are any CFS specialists in QLD. My doctor tried to find an exercise physiologist with experience in CFS and/or POTS with no success.

And thanks everyone else for your advice and knowledge. I'm glad that I at least have my acupuncturist who is very understanding. Complementary medicine practitioners tend to get all of us chronically ill when we're sick of conventional medicine, so he's had a lot of experience with our types lol
 
alex3619

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
@purrsian I used to see Dr Deed. He does understand many of the issues but he has become very conservative. I think he is under official pressure, though he hasn't said anything. I am looking for a new doc right now. What you can expect from Dr Deed is someone who knows the issues, but in the Australian system he is limited in what he can do.

The are at least two more and probably many more doctors who have an understanding here, in the greater Brisbane area alone. They often do not advertise though. Dr. John Whiting is one but I do not know if he will see new patients any more. There is one near me but I totally forgot her name, doh.

Its a search, and even then there are limits what they can do.

PS I think there are two John Whitings, the one who is an ME doc is a specialist in tropical medicine and publishes ... he even wrote a book on it I think.
 
purrsian

purrsian

Senior Member
Messages
344
Thanks for the info everyone! I had heard of Dr Whiting before, but had heard he wasn't practicing anymore. Searching online, it looks like perhaps he is. I now have quite a few people to google and investigate :D

It must be very frustrating to be limited in what you can do as a doctor because of the system. Doctors who look after many chronically ill patients tend to get scrutinised a lot for the amount of blood tests they run, so they eventually become more conservative in the tests they select and it takes much longer to get testing done, as they spread it out more. But for people like us, we need those tests to rule things out. Doctors frustrate me a lot, but I feel bad for the ones who actually try to be helpful but can't.
 
purrsian

purrsian

Senior Member
Messages
344
frog_in_the_fog said:
The doctors that say you are depressed and prescribe antidepressants aren't really helping you, I have found...
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I meant the ones who are actually knowledgeable in CFS, not the ones who "know" about CFS :D "Try to be helpful" probably wasn't a good use of words, as many of them try and fail due to lack of knowledge because they're all taught outdated stuff. Unfortunately, the few that actually research further and find out more are then limited by the system, telling them all we need is our happy pills and a good bit of exercise. Clearly o_O
 
M

malnay

Messages
2
alex3619 said:
@purrsian I used to see Dr Deed. He does understand many of the issues but he has become very conservative. I think he is under official pressure, though he hasn't said anything. I am looking for a new doc right now. What you can expect from Dr Deed is someone who knows the issues, but in the Australian system he is limited in what he can do.

The are at least two more and probably many more doctors who have an understanding here, in the greater Brisbane area alone. They often do not advertise though. Dr. John Whiting is one but I do not know if he will see new patients any more. There is one near me but I totally forgot her name, doh.

Its a search, and even then there are limits what they can do.

PS I think there are two John Whitings, the one who is an ME doc is a specialist in tropical medicine and publishes ... he even wrote a book on it I think.
Click to expand...

Hi I am new here but I would Love an update on good Doctors (Cfs or adrenals) in Brisbane or the Gold Coast. Things are detiorating and I am struggling. I have tried a couple who seemed to worsen symptoms.
 
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