Are you getting appropriate care from a doctor? (ME/CFS patients)

[TigerLilea]

I have learned to make do with goat and some sheep cheeses. Soy cheese doesn't do it for me, though.

I've tried some of the fake cheeses and they are vile! Same goes for the coffee creamers; extremely sweet and totally change the flavour of the coffee.

 

[Amaya2014]

I'm scheduled to see Dr. Lapp annually and a phone call every 3-6 months in between. Seeing him involves travel..by air, can't make the 6hr drive. (Depending on how my financial situation changes, this may become too much of a burden).

I have a regular doc but CFS is a psychiatric illness to him and I just need to push through. He'd love to dose me up on antidepressants and can't understand why I'm unable to tolerate them "I need you to work with me"...lol . Anyways, he refuses to call it CFS but at least he's treating my Fibro with Provigil...WTH?!

As far as specialists, hematologist said my elevated IGG may or may not be abnormal but it meant the body was "fighting something". Cardiology said holter monitor showed PVC's that may or may not be normal and some bradycardia. Endocrinology found cortisol to be sufficient but a Vitamin D low. Neurology had no clue...MRI with frontal lobe T2 hyper intense flairs of "undetermined significance". I've had no luck with two Rheumatologists. Both said they "didnt deal with CFS. I also had a neuropsych test that showed cognitive impairment...diagnosed as depression.

I've been fortunate to get these referrals. It's been a lesson in modern medicine. Somehow I've avoided being sent to a mental ward...but it's not for lack of trying...diagnosis like parasthesia, somatization, conversion disorder have all been hurled at me. I'm still standing..when I'm not crashing, that is!

 

[oceiv]

About the canadian health care system, it's all great if you need emergency services (heart attack, accident, stroke, etc) you will be seen, how rapidly depends on regions to regions and many other factors. you will receive world class care if you have cancer or HIV, and if you are a kid.

However in the province I live, there seem to be a political determination to bury this disease, and make sure we do not receive medical care. See, it is much cheaper to get patient in group setting (never mind they can't make it, that they have light and noise sensitivities and have cognitive and memory lapses). They are pretty determined to push for self-management (like if we haven't done that all along) and learn about pacing at long last. Moreover they want us to meditate and see a naturopath. This is not the medical care I signed up for. The problem with group sessions and self management is at the end, if we are still sick, we will be told it's our own fault and we didn't do it right and more scarier, that they have had great success with it.

(i will save the story of my abnormal CT scan for a private message.)

That makes sense. The U.S. medical system is also better with acute and emergency care. Western medicine, in general, needs some major updates for this century to better deal with chronic conditions. The people I know are in a different region of Canada. The region may have more doctors.

Indeed there does seem to be such political determination. Unfortunately, your phrasing seems to apply to most (all?) countries, when it comes to ME/CFS. But the group approach is crazy. It seems like another obstacle course to make patients there worse, not unlike @Raines ' situation. Except in your case, there's not even a holy grail of an expert at the end of the course, only a push to get better on your own. I like meditation when I can do it, but it's no cure. Otherwise, we'd all be well.

Understood about the PM.

@oceiv
I happen to live near to a GP who has a special interest in ME/CFS and spends most of her working time seeing people with ME rather than general practice. So at least I can get to see someone who understands the issues and can point me towards specialists who have some understanding when it comes to dealing with other health problems. However, I don't imagine I would ever be able to get e.g. Antivirals.
I am concerned that there is no one else with a special interest around, and that I am likely to lose the support I can access at some point in the not too distant future. I really feel for people in other parts of the country who don't have any options.

Yes, it's not right that you only have that one treatment to try. Although it may be helping you, a range of treatments are usually needed to effectively treat all of our many symptoms. I can relate to you fearing you will lose even what you have access to now. It's frightening. In my case, there were complex and many factors in how and why I lost access (many did have to do with the medical and governmental systems. But I hope your story will go in a much better direction.

I watched a fascinating program on the brain over the weekend. The possibilities of science are endless. One segment was about getting a paralyzed patient's hand to move, using signals from his own brain! If the will is there, the breakthroughs will follow. This is why researchers and doctors like the OMF, Dr. Montoya and Drs. Lipkin and Hornig give me some hope, with their well-designed and hopefully large studies.

 

[MeSci]

I'd like to be clear the NHS is an amazing thing, if I had something else I know I'd be well treated and cared for. I'm angry with how my disease is treated, they do amazing things for many others.

Don't bank on it. Even apart from ME I have had multiple misdiagnoses, missed diagnoses and incorrect treatments. A prescription for an ACE inhibitor made me seriously ill twice with low blood sodium - almost low enough to kill me - and the doctors failed to diagnose the cause and a hospital gave me treatment that I discovered since was seriously incorrect. Even supposedly top experts have made completely incorrect claims during appointments, and dismissed my own input (I have a Master's degree in medical science).

Misdiagnosis is widespread, and prescribed medicines are one of the biggest killers around the world, UK included. I often hear personal accounts of missed diagnoses, misdiagnoses, incorrect treatments and patients with serious illnesses being sent away/dismissed.

The main thing that is good about the NHS is that it is free. Apart from that, it is seriously flawed and poorly run.

 

[oceiv]

justy, see if you can wait at home rather then in the waiting room and get the surgery to give you a phone call when the person before you gets called in so you know when to leave. This is what I used to do at times when I had someone to take me to the local surgery appointments.

Ive collapsed several times waiting in a waiting room.

It's amazing to me that any doctor will let you wait at home! When I was getting care, I sometimes had to wait over two hours. But goodness forbid that a patient is running late.

Collapsing in the waiting room is frightening.

What other strategies do patients here use to get themselves to a local doctor, if they're able to get there?

 

[taniaaust1]

It's amazing to me that any doctor will let you wait at home! When I was getting care, I sometimes had to wait over two hours. But goodness forbid that a patient is running late.

Collapsing in the waiting room is frightening.

What other strategies do patients here use to get themselves to a local doctor, if they're able to get there?

I collapsed at least two times with two different doctors during the appointment or while waiting in waiting rooms or just before I could get out the door (a receptionist getting me to stand to stand at a desk to sign something can do it), I've collapsed another two times in doctors clinics car parks (with yet a third doctor).

I really shouldn't even be leaving my home to go to medical appointments but there is no other options where I are IF I can get the support to get taken (I cant go anywhere without someone by side as its too dangerous, I've almost hit in a car park when collapsed as I cant get again and cant be sat up either if I get to that point. I have issues crossing roads too).

The most embarrassing "doctors clinic" collapse was a time when I collapsed at the front desk so then NO-ONE ELSE could get to the receptionist desk in a busy clinic and they had the desk right near the front door too so people were having trouble then squeezing past the doctors all trying to attend me. (if Im sat up when like that I can go unconsciousness or I got into like a seizure, so they couldn't move me).

My doctor couldn't then get the drip line in (my veins were like collapsing) so she had to call for the senior doctors to do it.. so by that point I had 3 doctors trying to deal with me (most of the consults in the clinic had to be stopped!!! all due to me).. all with everyone in that waiting watching only metres away.. while the ambulance was on way.

I ALWAYS now get taken in the wheelchair but even then I can run into big issues and end up collapsing and end up falling out of the wheelchair if I over do waiting at an appointment.. or just in one too long or get hit with a chemical exposure.
....................

If appointments are too far from my home (eg not within minutes away).. sometimes then a support worker ***sighs which I don't currently have to take me to appointments so hence why currently Im getting near nil medical care*** will do the waiting inside while leaving me laying out in the car to come and get me once I'm called (the disability parks tend to be right outside the door in most medical clinics).

The other thing some of my doctors do if there is a way for me to get there is Im placed in a spare consult room with a bed so I can lay down while waiting.

For some of us not getting medical care, the fact services aren't all set up to cater for ME/CFS patients is just as big an issue as the having good doctors.. as even a good doctor is no good if they cant come and see you at home and you cant get in there. (there is only so much a doctor can do via phone.. and those who are severe actually need regular monitoring of things).

 

[taniaaust1]

@oceiv http://forums.phoenixrising.me/inde...-treatments-and-other-me-things.13903/page-87 my post number 1732 on that page (last post).. is a letter from my GP for my court case.. you can see from that how my medical doctors (this one is a non ME/CFS specialist) are trying to help me but have their hands tied as the issues around us go deeper. It's huge issues with the whole system.

A CFS specialist wrote a letter saying I can only walk 3 steps, that was ignored too. I feel like I've been left to die, if I get completely bedbound again.. seriously I'm dead, I wont survive cause of the lack of support here for me..this is why as sick as I are, I've been forced into having to take my case to court and have that added stress which I certainly don't need. (I'll be like that guy who had ME in England who starved to death due to being too sick to feed himself but Im not in England, Im in Australia. I fear for my very life). I have been that sick before but I had my children as carers at the time which they aren't here to help me now.

The problem those who have ME/CFS have go way beyond just having a doctor, the issues is at some top government levels who allow huge discriminations to go on around towards us, who don't include ME in with other severe illness for things. If I had another serious medical issue eg cancer.I'd be under the care of a hospital and they'd be making sure I was getting to see doctors but with ME nothing. We fall through the support gaps even if means we never are able to get to a doctor or cant even take care of ourselves..

I was told by the hospital that they do not deal with this other then emergency treatment eg every time I collapsed and end up there (and then I'm sent back home without the help I need cause ME doesn't come under the hospital system, the drip wears off within 2 days).

 

[oceiv]

@oceiv http://forums.phoenixrising.me/inde...-treatments-and-other-me-things.13903/page-87 my post number 1732 on that page (last post).. is a letter from my GP for my court case.. you can see from that how my medical doctors (this one is a non ME/CFS specialist) are trying to help me but have their hands tied as the issues around us go deeper. It's huge issues with the whole system.

A CFS specialist wrote a letter saying I can only walk 3 steps, that was ignored too. I feel like I've been left to die, if I get completely bedbound again.. seriously I'm dead, I wont survive cause of the lack of support here for me..this is why as sick as I are, I've been forced into having to take my case to court and have that added stress which I certainly don't need. (I'll be like that guy who had ME in England who starved to death due to being too sick to feed himself but Im not in England, Im in Australia. I fear for my very life). I have been that sick before but I had my children as carers at the time which they aren't here to help me now.

The problem those who have ME/CFS have go way beyond just having a doctor, the issues is at some top government levels who allow huge discriminations to go on around towards us, who don't include ME in with other severe illness for things. If I had another serious medical issue eg cancer.I'd be under the care of a hospital and they'd be making sure I was getting to see doctors but with ME nothing. We fall through the support gaps even if means we never are able to get to a doctor or cant even take care of ourselves..

I was told by the hospital that they do not deal with this other then emergency treatment eg every time I collapsed and end up there (and then I'm sent back home without the help I need cause ME doesn't come under the hospital system, the drip wears off within 2 days).

I've been answering posts in order, slowly, as I'm able. But need to respond to this last post. @taniaaust1 , I need to send you a lot of these: They're virtual and won't cause any pain, like real-life hugs sometimes do. While it's great that you have a doctor to send letters on your behalf, in order to get you to the medical appointments you desperately need, it isn't nearly enough. It's atrocious that you, the CFS man you wrote about and indeed ME/CFS patients all over the world should feel that society has cast us aside because we're not sick in the right way. We're sick in a way most doctors don't want to understand. We're not sick in a way the government understands. Even though, as one Dr. just said in a recent article, once he knew how to spot ME/CFS, it wasn't hard for his entire staff to be able to be able to recognize it, too.

As soon as he knew what these illnesses looked like, he said, anyone working in his office could spot them immediately.

Please know that although we're not there in person, there are many here who support you. You have gotten yourself through this much and although it doesn't feel like it oftentimes, you will get yourself through much more. Reading about your fight for care has been inspiring to me, personally. I feel like you have a lot of fight in you and I hope that fight is successful, very soon.

 

[GracieJ]

I continue to use alternative medicine and continue to improve, in spite of setbacks. It has not avoided the time factor bringing in new symptoms, but relief has been relatively quick for the new twists in the tale. I hope to regain normalcy and full health as the years go by. This developed gradually. I think it can fade gradually.

 

[oceiv]

Thank you all for your continued votes and comments. I've been having another stressful two days in my doctor access saga. It's pretty unbelievable what this previous doc did. This is why I went a little quiet. But please keep contributing.

 

[Raines]

Don't bank on it. Even apart from ME I have had multiple misdiagnoses, missed diagnoses and incorrect treatments. A prescription for an ACE inhibitor made me seriously ill twice with low blood sodium - almost low enough to kill me - and the doctors failed to diagnose the cause and a hospital gave me treatment that I discovered since was seriously incorrect. Even supposedly top experts have made completely incorrect claims during appointments, and dismissed my own input (I have a Master's degree in medical science).

Misdiagnosis is widespread, and prescribed medicines are one of the biggest killers around the world, UK included. I often hear personal accounts of missed diagnoses, misdiagnoses, incorrect treatments and patients with serious illnesses being sent away/dismissed.

The main thing that is good about the NHS is that it is free. Apart from that, it is seriously flawed and poorly run.

I've been thinking about your reply to my comment, and hate to admit your right.

While I can think of several times when the NHS has been amazing to people I know (grandfathers fall, a heart attack, a breast cancer scare), also I know people who have been treated badly.

without sharing too much about someone else last week a very vulnerable person (think serious break down) went to their weekly appointment only to be told that the dr they were seeing had left. as in no longer worked there left. there was no other dr to see (which at the very least you would have expected) and no one bothered to phone the patients.
so my friend made the effort to get there only to be sent home again.

I guess I just tend to think of the times that the NHS has been good, and assume any bad experiences are one offs.
maybe the good experiences have more to do with the individual drs and nurses on those cases and less to do with the system itself.

 

[Gingergrrl]

Thank you all for your continued votes and comments. I've been having another stressful two days in my doctor access saga. It's pretty unbelievable what this previous doc did. This is why I went a little quiet. But please keep contributing.

@oceiv Hoping you can get this situation straightened out. It sounds horrible!

 

[mermaid]

I have been lucky to have a GP whose attitude to ME/CFS at least has not been negative and hostile - mostly due to an NHS specialist moving to our area a few years before I was diagnosed (by him). He seems to have transformed some attitudes in the county at least, but he has now retired sadly as he was an immunologist and was willing for me to try Immunovir.

Unfortunately since ME/CFS treatment in the UK is rigidly 'treated' via the NICE guidelines this means nothing other than treating the symptoms and certainly not looking at biomedical causes. Early on I had tests done via Dr Myhill, and my GP was not willing to let me have magnesium or B12 injections on the NHS but was willing for a nurse to teach me to inject myself, and also lets me use the practice blood taking service for free if I have private blood tests elsewhere.

The GP also went out of her way to enable me to see an endocrinologist of my choice who allowed me to use T3 (I was already on thyroid meds), and that alone is unusual especially as I am on T3 only now which is expensive. Also though i visit her rarely she is always happy to refer me if it's within her power to whoever I may need.

I have had some fantastic treatment on the NHS for a serious eye condition which would have taken the sight of one eye without the operation I had, and also a subsequent cataract op. However chronic health issues are less well understood or supported, and these can drastically affect people's quality of life. And as has been mentioned, the NHS don't always get it right, and I have heard of cases where they got it badly wrong.

 

[WillowJ]

The food issues are so tricky. I used to also travel with my own food, but much of what I can eat is highly perishable (like poultry).

When I was better than I am now, I traveled to see a specialist. I went with my carer, and we got a good deal on a hotel room with a mini-kitchen. She shopped (there was a Trader Joe's in the area), and I ate in the room. It wasn't chicken soup, but it was safe and I got by for a few days.

In days gone by (when I was better still) I used to travel with my lunch in a cooler, but that was before 9/11 and I don't think coolers are allowed now.

 

[WillowJ]

Thank you all for your continued votes and comments. I've been having another stressful two days in my doctor access saga. It's pretty unbelievable what this previous doc did. This is why I went a little quiet. But please keep contributing.

So sorry you are having these issues. You need some , too.

 

[oceiv]

Thank you @Gingergrrl , @WillowJ and others. I really appreciate the hugs and good wishes. I just didn't imagine the extent and continuing aspects of the situation.

This situation is what initially motivated me to start this conversation and to try to do some advocating on this topic. Reading through others' comments in this thread has illustrated the extent of too many ME/CFS patients' doctor access problems. As well as how much effect doctors can have on our lives, just by not being willing to treat us/only treating non-ME/CFS symptoms. It may be a small decision for them, but that one decision can have huge effects on our entire lives. It's staggering.

 

[taniaaust1]

Thank you all for your continued votes and comments. I've been having another stressful two days in my doctor access saga. It's pretty unbelievable what this previous doc did. This is why I went a little quiet. But please keep contributing.

I think I can believe literally anything at this point from my own experiences when it comes to doctors. I hope your dr issue sorts out soon.

I had one doctor have me more in with her under the pretense to wanting to try to help me with the ME/CFS so she could sleep with my lover. Turned out she did only got me to move in with her so she could see my elderly friend who lived not that far from her.. he was/is also my lover though unfortunately he's also married. She then had unprotected sex with him **sighs he's not great at staying faithful** while I was still seeing and sleeping with him (which I found out 6 weeks after only cause he told me). It really mentally messed me up there for a while to be betrayed by a doctor in THAT way (along with the lover betrayal). I was under therapy for that situation and my ME/CFS being used like that for a long while (I had about 10-12 therapy sessions over the doctor doing this to me).

Im not kidding but this doctor was also sexually seeing other patients of hers sexually who were married. I knew of at least 1.. probably 2 others (not sure if the other was single or with someone) who would come around while I was living with her with sexual relations (no doubt their wives were probably also her patients and going unaware of this).

What's ironic is I didn't at all want to move in with this doctor but my friend talked me into it as he really believed she was going to try to help me (she was actually responsible for then realising once I moved in that I had Aspergers and got to see specialists in that, I'd still be undiagnosed there if it wasn't for that, she was also the first doctor who realised I had POTS so I really have mixed emotions over her!!).

I kind of wish I was capable of writing a book on my experiences which have happened around this whole illness... (I went to jail for a month to get 3 meals a day causee of being too ill to cook but then it turned out they feed so bad diet there, too high in carbs for me, I couldn't eat their meals, so I accepted a bail till the case which was completely wrong got thrown out of court..

I'd ended up in court on that occasion as I'd gone suicidal over my situation of my dr using my ME/CFS to get closer to him and sleeping with my lover no condom or anything. I was going to burn myself up and left a petrol can where I was going to do if after I chickened out after near lighting the lighter and sought mental health help but then was changed with arson over the can left there (after she'd already kicked me out for not complying with her wish to be in our relationship).

There was other huge full out too of being kicked out of this doctors house after being talked to move in "as she wants to help you and will help you" as I couldn't go back to where I'd previously lived without huge trouble as others had moved into there. Some of the full out still is with me today as I had to get others kicked out to be able to move back in to my previous house and that has caused huge family issues which could be permanent. 4-5 years or so later the issue is still there and I have family which now wont talk to me due to it.

It's mind boggling that this doctor caused me so much trouble.

 

[oceiv]

I can say I basically don't get any appropriate treatment even non ME/CFS treatment cause Im housebound so cant get to doctors.

Right now I'm fighting to get the prescription I need for severe period pain so I wont end up having to sleep in the bath tub again. (I had a desperate phone appointment for that a couple of weeks ago but the prescription doctor said she'd do didn't turn up and the receptionist told me its my own fault for not coming in and she wont put me onto the doctor! and she told me to find another doctor when I cant get to doctors). Im being allowed to go diabetic without any treatment cause I cant get to doctors. (I'd probably have a diabetic diagnoses by now if I could get there as my glucose is going over 11 at times which is diabetic range)

My health is being majorly damaged due to lack of medical care and disability support. (since last year I now get asthma too as my house gets so dirty and I get asthmas attacks if my floor isn't vaccumed about every 2-3 weeks).

It took over 10 years to find a doctor who would even treat basic ME/CFS symptoms eg sleep problems. Cause of my ME/CFS diagnoses, I think they didn't treat anything. I also had very severe FM which went untreated to.

I saw over 30 doctors in that hunt for even just a doctor to treat basic ME/CFS symptoms (I almost died in that time when I crashed so bad so was completely bedbound for 9mths with no medical support at all and was going comatose for days at a time without food or water etc ).

In the end I found a "CFS' doctor (not a ME doctor) though the local ME/CFS society, one who finally properly diagnosed me but offered no treatment at but through him I did finally get the disability pension.. Another CFS doctor who I found out about through the ME/CFS society, it took 3 years for me to be able to get in with him and he was the very first CFS specialist to start treating CFS symptoms.. 12? years into the illness?

I know people in my state with no even CFS doctor as they cant get into even a suitable one of these one of these has had ME/CFS for 25? years. (some of the "CFS" doctors I got in with, weren't taking on patients and I only got in with them cause I'm so severe).

The first CFS specialist I saw after 10 or so years, offered no symptom treatment at all and told me things to like to meditate for my severe sleep issues in which I sometimes didn't sleep for up to 5 days till I got to the point I was hallucinating through lack of sleep!!). He basically just counselled which didn't do a thing for my ME/CFS

I've now been through about 6 "CFS" specialists (most of these now retired or died) but never had a ME specialist as my doctor. There are lots of medical tests I need but have never had done., my whole medical care has been quite poor even in past when I was getting to the "CFS" specialists.

There is no ME doctor offering things like anti-virals etc in my state and I get viral issues.

The best which can be hoped for here (Sth Australia) through those is a tiny but of symptom treatment eg bit of POTS treatment etc but if you have severe POTS like myself, you are screwed. I only get my saline IVs well after I should be getting them, only when I've gone unconscious, collapsed and cant get up again (and getting seizure symptoms and have my BP at that point really wacked out) and an ambulance has to be called. A hospital dr told me my kidneys are at risk due to my blood test results starting to show kidney damage due to my POTS not being treated properly.

I'm at risk of dying due to lack of medical care. (Due to this I'm trying to currently sue the state disability service for my unmet care needs and the discrimination, without more care, I'm very likely to end up dead).. I'm now suicidal on top due to all the discrimination and insults I've received and bullying by services who should be helping me and cant even access my psychologist who understands ME/CFS to a good degree as she's had it herself, so cant even get counselling I urgently now need. I get blamed for my own disability by the states disability service.

Our medicare doesn't cover psychologist over the phone and I have no way to get to appointments or to my other specialists I would be otherwise be seeing eg my allergist etc. As I collapse so much, I cant leave my house alone without support. I have a lot of major issues., so all my medical stuff is being unmanaged and is leading to dangerous issues.

When upright my BP is going up to nearly 200 at times (dangerous levels) other times its gone to zero and this is crazily is being unmanaged.. though the IVs when I end up in hospital fix this. I have severe low blood volume. Im at risk of developing into heart failure due to this going untreated properly or going blind. A ME/CFS study last year showed optic disk swelling, no doubt due to my BP spikes).

In my home town, a guy I believe had ME/CFS but as our local doctors never would diagnose this illness (I had to get diagnosed out of town and this other didn't drive) so he only ever got a FM diagnoses, he died. They'd only kicked him out of hospital only a week or so before his death as they wouldn't believe he was sick, they'd had admitted him 2-3 times but after only days kicked him out.

This guy was really struggling and hardly eating due to his low energy. While he was in hospital , he was often asleep when they brought the meals in and they didn't wake him up and was taking them away so he was going without eating there. My father ended up taking this (a friend of his) meals into the hospital due to this. (I was horrified over this whole situation but not well enough at the time to make contact with this person and talk to him about ME/CFS, so he died without ever knowing what his issue was).

One time they kept in hospital for about a week trying to work out what was wrong with him before pronouncing him healthy cause they couldn't find anything wrong so kicking him out again, this happened right before he died. He died of organ failure. He was very sick and couldn't do much at all for years...suffering alone without help while being told he was "healthy". (my father complained that his mate was always in bed asleep when he went to visit him and I only realised he had ME/CFS after he got FM diagnosis, he also had IBS etc).

He I guess would of been in about his early 50s? when he passed away.

This is the thing: not getting care, treatment, diagnosis, it can make patients lose hope. I'm supportive of the fact that you are fighting this legally. I really don't think I'd be able to pull off a court battle right now. It shouldn't have to take individual legal fights to each get medical care. There should be a blanket legal mandate from our governments about doctors who prevent us from getting appropriate care. From the two surveys I read, a significant portion of our patients wait 5-20+ years for a diagnosis. Shameful. In any other illness, the medical establishment recognizes that waiting 10 years for treatment would make an illness worse. I'm sorry you had to develop so many other symptoms along the way and face such life-threatening peril. All due to extreme medical neglect! Sorry seems too little to say in the face of such things. Hopefully, your case will set some legal precedents.

I'd like to honor the patient you mentioned and his life. As is said, he lives on through our memories now. Sadly, we must carry on the fight for him and others, in his stead.

 

[oceiv]

I'm scheduled to see Dr. Lapp annually and a phone call every 3-6 months in between. Seeing him involves travel..by air, can't make the 6hr drive. (Depending on how my financial situation changes, this may become too much of a burden).

I have a regular doc but CFS is a psychiatric illness to him and I just need to push through. He'd love to dose me up on antidepressants and can't understand why I'm unable to tolerate them "I need you to work with me"...lol . Anyways, he refuses to call it CFS but at least he's treating my Fibro with Provigil...WTH?!

As far as specialists, hematologist said my elevated IGG may or may not be abnormal but it meant the body was "fighting something". Cardiology said holter monitor showed PVC's that may or may not be normal and some bradycardia. Endocrinology found cortisol to be sufficient but a Vitamin D low. Neurology had no clue...MRI with frontal lobe T2 hyper intense flairs of "undetermined significance". I've had no luck with two Rheumatologists. Both said they "didnt deal with CFS. I also had a neuropsych test that showed cognitive impairment...diagnosed as depression.

I've been fortunate to get these referrals. It's been a lesson in modern medicine. Somehow I've avoided being sent to a mental ward...but it's not for lack of trying...diagnosis like parasthesia, somatization, conversion disorder have all been hurled at me. I'm still standing..when I'm not crashing, that is!

It's great that you have some in-person treatment and phone sessions with Dr. Lapp. Has he been able to help your illness? Understand the future financial uncertainty well. These kind of factors weigh on a patient, who should be focused only on healing.

Your summary of experiences with specialists underscores the drawbacks of having so many uncoordinated doctors each working on one small aspect of your disease. It reminds me of the blind men and the elephant parable:

six blind men were asked to determine what an elephant looked like by feeling different parts of the elephant's body. The blind man who feels a leg says the elephant is like a pillar; the one who feels the tail says the elephant is like a rope; the one who feels the trunk says the elephant is like a tree branch; the one who feels the ear says the elephant is like a hand fan; the one who feels the belly says the elephant is like a wall; and the one who feels the tusk says the elephant is like a solid pipe.
A king explains to them:

All of you are right. The reason every one of you is telling it differently is because each one of you touched the different part of the elephant. So, actually the elephant has all the features you mentioned.[2]

This is not a great way to treat any disease. True, you are lucky to have referrals, but the system can do better. Some doctors have moved to a more coordinated way of care for other diseases, but very few diseases have this option, currently.

It is a credit to you that you have evaded the psych remedies pushed on you by your GP! Your strategies for doingso, yet retaining your doc must be good. I never heard of Provigil for Fibro - I thought it worsened our disease.

 

[oceiv]

Don't bank on it. Even apart from ME I have had multiple misdiagnoses, missed diagnoses and incorrect treatments. A prescription for an ACE inhibitor made me seriously ill twice with low blood sodium - almost low enough to kill me - and the doctors failed to diagnose the cause and a hospital gave me treatment that I discovered since was seriously incorrect. Even supposedly top experts have made completely incorrect claims during appointments, and dismissed my own input (I have a Master's degree in medical science).

Misdiagnosis is widespread, and prescribed medicines are one of the biggest killers around the world, UK included. I often hear personal accounts of missed diagnoses, misdiagnoses, incorrect treatments and patients with serious illnesses being sent away/dismissed.

The main thing that is good about the NHS is that it is free. Apart from that, it is seriously flawed and poorly run.

Your experience with the ACE inhibitor sounds seriously frightening. Were these mistakes and dismissal of your input wrt your ME/CFS and/or other conditions? Current doctor education and training discourage knowledgeable patients participating in their treatment course. Too often, doctors make a negative judgments on such informed patients, ones who research their conditions and come with ideas. CNN's medical reporter, Elizabeth Cohen, did a series of reports on being an empowered patient and pushing back on doctors who resist. The initial spark for her series and book was an experience with her daughter and how she, even as a doctor, was treated when she pushed back. She wrote about how important it was for her to advocate until her daughter got the right care. She was treated much like you, even with her being a doctor. Eventually, medicine will have to change in order to respond to the reality of most patients doing at least some research online. Finding an open-minded doc is really a treasure. I had one (a specialist for a co-morbid condition) for a while. She moved, unfortunately.

In ME/CFS, most of us are more informed than local doctors, which leaves them and us in an all too awkward position.

Unfortunately, even the best systems have medical errors and as always, we as patients have to remain vigilant. We need to be our own advocates, despite doctor objections. There have been governmental payment structure changes here to help reduce errors and things like hospital-caused infections. There is always room for more improvement.