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

[Sushi]

I must admit though that I sometimes wonder if my sinus issues and CFS are one and the same?? I can't help but wonder some days if I was able to cure one if it would automatically cure the other.

In the early years of what I can see now were the beginning stages of ME/CFS I thought that I just had intractable sinus infections. Later with appropriate systemic treatment for ME, the sinus issues are now almost gone.

Sushi

 

[oceiv]

i have many experiences of physicians who are not willing to investigate, or mainly write in the consultation letter that " for patients such as me, the last thing we should do is offering further testing therefore reinforcing that I have a physical illness." (You may have read that from other threads)- I was going in with CT scan showing a lesion on my ankle. Problems including abnormal imaging are downplayed and I am not believed because of the illness I have.

Even the supposedly specialized clinic is not willing to get serious and test patients, instead they are offering coping sessions, meditation and what not.

Letters of advocacy are left unanswered. It is all truly unbelievable, we are treated as second class citizens.

You summed it up @Kati . Having ME/CFS means being treated as a second-class citizen, in all or most aspects of life, but especially medical. I didn't read about your CT scan - that's appalling! The medical attitude towards not reinforcing, acknowledging or treating ME/CFS, under the guise that doing so is in our best interest - that right there is part of why we're so mistreated. To think that your visible symptoms would be dismissed because you also have ME/CFS, is truly immoral. I've learned from my years of illness that people (not just doctors) simply don't see and easily ignore what they don't want to see. In one of Leonard Jason's studies, he found that doctors are more likely to attribute women's ME/CFS symptoms to psychological causes and send them to a psychologist. Not that these travesties don't happen to male patients as well. The same study found that doctors shift blame onto patients to compensate for the excessive failings and lack of knowledge about ME/CFS in the medical profession. (The study is available for free viewing on the right of the page). There is no excuse for all of it and ultimately, doctors are disavowing the basic medical precept of 'First, do no harm.'

No, unfortunately I think some people have a mistaken perception of the Canadian health care system, it's brutal. There are massive funding shortages and wait lists, as the Canadian government desperately clings on to this cherished notion of public health care for everyone. I'm sure we will move to more of a European model of health care in the next decade, so (both public and private), so hopefully that will help improve the situation for Canadians with ME. I've also had to move provinces once which reset my wait times back to the beginning, but to live in a city of more than one million people and only have one CFS/ME specialist (currently not accepting new patients) is incredibly frustrating and I'm sure a lot of people in my region feel the same sort of helplessness in regards to treatment options.

Before having ME/CFS and reading about Canadian ME/CFS patients' troubles, the knowledge I had about the Canadian system was from the people I know who live there. Now, I know the reality for ME/CFS patients. For the people I know, with any of their illnesses and health conditions, they got great care. They were not ill with ME/CFS, though. I suppose, too, that it's all relative. I had no insurance at all before I got sick with this disease. Later, I had to pay over $300/month for insurance plus the much higher, uninsured-rate drug prices (American drug prices are the highest, IIRC, but even more so if you're uninsured - it can run into the thousands per year), all while not being able to work. The grass is always greener...

The point about the ratio of patients to ME/CFS patients is a central one in our lack of doctor access. Even if we all were physically and financially able to travel to an expert, there simply aren't enough of them to go around. One of our central questions as patients and advocates is how do we fix this problem, without having to wait for wholesale healthcare change? I truly hope that something soon can change to allow you the medical care you deserve. I'm happy to see you're also working on an advocacy project.

We have that in Australia, and it does open up options, but the wait lists can still be very long for the public system and specialist or surgical services.

Every single healthcare system has its serious flaws. It seems that most ME/CFS patients, no matter the difference in our healthcare systems are left waiting for care, one way or another. No matter which healtcare system each of our countries have.

 

[Kati]

You summed it up @Kati . Having ME/CFS means being treated as a second-class citizen, in all or most aspects of life, but especially medical. I didn't read about your CT scan - that's appalling! The medical attitude towards not reinforcing, acknowledging or treating ME/CFS, under the guise that doing so is in our best interest - that right there is part of why we're so mistreated. To think that your visible symptoms would be dismissed because you also have ME/CFS, is truly immoral. I've learned from my years of illness that people (not just doctors) simply don't see and easily ignore what they don't want to see. In one of Leonard Jason's studies, he found that doctors are more likely to attribute women's ME/CFS symptoms to psychological causes and send them to a psychologist. The same study found that doctors shift blame onto patients to compensate for the excessive failings and lack of knowledge about ME/CFS in the medical profession. (The study is available for free viewing on the right of the page). Not that these travesties don't happen to male patients as well. There is no excuse for all of it and ultimately, doctors are disavowing the basic medical precept of 'First, do no harm.'



Before having ME/CFS and reading about Canadian ME/CFS patients' troubles, the knowledge I had about the Canadian system was from the people I know who live there. Now, I know the reality for ME/CFS patients. For the people I know, with any of their illnesses and health conditions, they got great care. They were not ill with ME/CFS, though. I suppose, too, that it's all relative. I had no insurance at all when I got sick with this disease. Later, I had to pay over $300/month for insurance plus the much higher, uninsured-rate drug prices (American drug prices are the highest, IIRC, but even more so if you're uninsured - it can run into the thousands per year), all while not being able to work. The grass is always greener...

The point about the ratio of patients to ME/CFS patients is a central one in our lack of doctor access. Even if we all were physically and financially able to travel to an expert, there simply aren't enough of them to go around. One of our central questions as patients and advocates is how do we fix this problem, without having to wait for wholesale healthcare change? I truly hope that something soon can change to allow you the medical care you deserve. I'm happy to see you're also working on an advocacy project.



Every single healthcare system has its serious flaws. It seems that most ME/CFS patients, no matter the difference in our healthcare systems are left waiting for care, one way or another. No matter which healtcare system each of our countries have.

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.)

 

[oceiv]

I answered three times. I get irregular treatment from an ME doc, and I have limitations on getting to one, and Other. There are very few good treatments, even the best treatments don't work on everyone, and even where a treatment exists there may be regulation limitations on who can use it, or how much it costs, or how often you can do it. For example, quite a lot of testing is available in Australia, but to qualify for some tests you have to meet certain criteria. Now if there is a private clinic, and you can afford it, then its is sometimes available., but can cost thousands of dollars per test.

Until we have an effective and available diagnostic and evaluative tests, and effective treatments, things are always going to be dicey. The really good doctors can only see so many patients a year. If everyone could try to see them there would be five and ten and twenty year waiting lists.

The entire field is a mess.

About the waiting lists even in ideal conditions - exactly! The limitations of the current treatments in a heterogeneous patient, the cost differential for different sets of patients and the reality that wealthier patients can afford to get treated, while less well-off patients often can't, all factor into how and if we get care. Good observations and glad you brought them up, especially affording testing. With all of those limitations, do you feel that you would be better off if you could get regular expert care, perhaps without the travel? It's good that at least you are able to get some expert care.

I answered yes to treatment from a specialist.. That's only possible because I happen to live close to a doctor with a special interest. Treatment options are limited... The only useful thing I have been able to take is LDN. Interestingly I have been discharged from the public health system for both my other auto-immune conditions (endocrinology and rheumatology). My GP/PCP has told me that she wouldn't be prepared to prescribe the LDN for me,so if I can't see the local specialist I will lose that treatment option.
The lack of interest and support is rather mind-boggling. Basically I try to keep away from the doctors now. I think I may have found a supportive private endocrinologist for my thyroid issues.... The health system one was worse than useless and I believe his gung-ho approach actually did me a lot of harm.

Very fortunate indeed that your location allows specialist care! If you don't mind answering, how did you find this specialist? Glad to hear that LDN is working for you, it's regrettable though that other options are limited. I have a general question about LDN: Can people whose pain doesn't benefit from opiods respond to LDN?

I totally relate to and understand how a full-steam approach can make a patient worse. The problem then is (at least here in the U.S.), that doctors then see doctor-avoidance as "depressed" or "uncooperative." When in fact, we're avoiding what will make us worse. What is truly baffling is all of the stories about how health systems won't treat co-morbid conditions we ME/CFS patients have. The discharge for two supposedly-accepted illnesses is disturbing. Is this because you have ME/CFS or another reason? The theme of local doctors not being willing to continue specialist care is definitely woven throughout this thread. I hope you are able to continue to get the LDN, regularly.

 

[alex3619]

With all of those limitations, do you feel that you would be better off if you could get regular expert care, perhaps without the travel?

With unlimited funding, yes. Instead of not having to travel, I would be even better off if I could afford to move house to the best doctors.

 

[oceiv]

I voted no I'm not able to get appropriate care form any dr

and also I'm getting irregular treatment from my local dr illness other factors limit number of visits


I voted no as the truth is I have never had any appropriate care (have any of us?) the tests I'd like to have are not available (wether its because the dr I'm asking doesn't see the point or because they are unavailable on the NHS too expensive or other reasons)

Like many others on this post, I'm more likely to get help with something (for example sleeping tablets, or a blood test) if I don't bring up the ME, just saying you have this disease shuts soo many doors instantly.

I also voted for getting irregular treatment from local dr, this conssits of yearly blood tests for my thirod issue, repeat prescriptions for the thirod medication and my antidepressents, and the occasional cream for my exzema. It is a huge chuck of enegy for me to go to my local gp and it only seems worth it if i really have to go.


I'm at the moment jumping through hoops to get to see the only NHS ME/CFS dr in the county, I have to get through several more rounds of forms and talks and assessments (including at least one with a psychiatrist!!) before I can even hope to see/talk to this Dr. also found out at the last meeting (which involved a group of us being talked at for over 2 hours (how is this appropriate for any of us with moderate ME??)) that this dr only works 1 day a week for the service - the whole of west sussex's ME/CFS NHS patients have only 1 specialist dr working only 1 day a week, and I can't expect to even get close to the possibility of seeing/talking to him for months yet.


Appropriate care on the NHS? - I don't believe there is such a thing for ME/CFS patients.

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.

I've bolded some of your key quotes. This thread is a treasure trove of important observations and quotes on living with and getting treatment for our disease - I should've started bolding earlier.

Good luck with what sounds like a tortuous process to qualify for seeing the only NHS ME/CFS doctor there. It reads like exactly what a person would design if they designed an obstacle course to make ME/CFS patients worse! I wonder if any other illness populations are required to make themselves worse in order to get care? I ask this question frequently as I think through much of my previous care and the ME/CFS patient experience, in general. I really hope you are successful in what sounds like a quest for the holy grail - the once per week only doctor for your whole region.

It's terrible that although doctors shift the initial blame for our disease onto us and then also blame us for not getting better, the truth is that too many doctors seem to also be standing in our way by not ordering tests and not giving appropriate treatment. Then, the next layer of obstacles are our government/insurance/financial obstacles.

From our little, unscientific survey, a small percentage of patients are getting regular and appropriate care. But most are going to extreme lengths to do it. Another important personal doctor access story and good questions, @Raines . Even those getting irregular and no care seemed to have tried to get care more and gone to more lengths than any sick person should have to do. All we want is parity to what other ill patients automatically get.

Reading here on PR, about how one New Zealand org has some ME/CFS patient advocates to help in these matters makes me wonder if other and larger countries or patient orgs could replicate and benefit from this model?

Here in New Zealand we have a field worker in all five of our largest cities except for Auckland. This is a bit of an anomaly since Auckland dwarfs the other in terms of population (over twice the population of the 2nd largest city)!

Given NZ's size it's feasible to cover off an entire town with a field worker so perhaps that's why it's not common elsewhere?

Field workers are awesome. Get people access to all the disability services they are entitled to, get them to support group meetings, even call on their birthday! Sounds small but makes a huge difference for people who have been stuck in bed for years and can't fend for themselves.

a key role for the support worker is liaising with GPs and educating them. This is the model in other cities.

 

[Raines]

I really hope you are successful in what sounds like a quest for the holy grail - the once per week only doctor for your whole region.

thank you @oceiv I also hope that when I get there the dr is able to order more tests and give more treatment the the NICE guidelines suggest.

Even those getting irregular and no care seemed to have tried to get care more and gone to more lengths than any sick person should have to do. All we want is parity to what other ill patients automatically get.

Yes I am amazed at how much and how far people on this forum have had to do/go for any hope of propper treatment.

 

[TigerLilea]

Huge numbers of ME patients have sinus issues. They are often unresponsive to standard treatments.

That is my problem right now. I'm on antibiotics and it did help with the feeling run down, however, the sinus pain is even worse now and my ears feel very swollen even though there is no sign of infection in them. I don't mind the sinus pain so much but the malaise is starting to be a problem.

 

[TigerLilea]

I did hear one anecdote from my sister's doc about one person who got sinus surgery and all their other autoimmune-type issues cleared up. I guess this is not common, though--I hear more stories like what @alex3619 said.

I have had six CT scans and nothing shows up as being wrong on them so surgery is out. To quote one ENT, I have almost "perfect" sinuses. They have absolutely no idea why mine swell up when they do.

 

[SOC]

That is my problem right now. I'm on antibiotics and it did help with the feeling run down, however, the sinus pain is even worse now and my ears feel very swollen even though there is no sign of infection in them. I don't mind the sinus pain so much but the malaise is starting to be a problem.

Thought about food allergies? I didn't think I had any, and I may not by conventional standards, but my sinus issues and ear congestion improved once I cut out gluten and dairy on the advice of my specialist. I confess to resisting the dietary change since I have no gut issues and didn't think I had any food allergies. Once again, the doctor was right and I was wrong.

 

[daisybell]

@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.

 

[oceiv]

That's a tricky question because improvements in different symptoms took vastly different amounts of time, and my improvement times were very different from my daughters'. My daughter had some improvement in her condition within 6 weeks of starting Valcyte. I didn't see much for 6 months. She was able to sit upright in the car longer as soon as she got some OI treatment. Since I didn't get OI treatment at that time, my ability to do the whole long car ride sitting upright took much longer -- maybe 8-9 months -- and was strictly the result of Valcyte, since that was all I was getting at the time.

Getting appropriate OI treatment made a big improvement in functionality for me. It didn't change my PEM, but I was able to do more because I could be upright more and walk around more without my BP and HR going nuts. Theoretically, any of us should be able to get OI treatment locally, but I imagine many of us have the same problem I did -- we don't have severe, classic POTS, so our local docs either don't recognize it or refuse to treat it as "not serious enough to warrant treatment". A lot they know.

My daughter went from nearly (probably should have been) housebound and heading downhill rapidly to about 90% functional in approximately 18 months. She takes a lot of treatments to stay there, naps more than most people her age, and is cautious about activity -- she doesn't do aerobic exercise, for example. She has done several continuous days of day-hiking a couple times a year for several years now. We don't think she gets PEM anymore, or if she does it's mild by our standards. She can tire more easily than others her age, so she may still have some exercise intolerance or effects from her OI. She is not cured, but is able to do most things people her age do.

I went from bedbound and unable to read a book to able to work full time from home and take care of all my ADL's including shopping without a wheelchair in about 5 and a half years. It came in fits and starts as my specialists tried different treatments. We just keep picking away at symptoms, giving me another 5% functionality here, another 10% there. The biggest was antivirals, though. Valcyte and Valtrex improved my condition by about 50% (from bedbound to mostly housebound) in 2-2.5 years. OI treatment after that gave me another 10-15%. Other things give me lesser improvements, but many little things add up. The biggest effect on PEM for me is from high-dose CoQ10 (1200-1800 mg daily). I was doing noticeably more within 6-8 weeks of starting the high dose.

My current specialist keeps picking away at my symptoms. She keeps an eye on my condition -- pathogens, immune changes, thyroid, OI, and so on -- and adjusts my medications/treatments as necessary. My condition does not stay stable at it's best level. I need regular management. I get new pathogens or reactivations of latent ones. My immune system is not good. My system changes as some things seem to be healing while others continue to deteriorate.

For me, it's not a question of seeing the specialist to get a one-off treatment and I'm done. I don't think ME is like that. We don't have a cure. There's no one magic fix-it treatment. Like a number of other chronic conditions, my ME needs on-going medical management to keep me functioning as best I can. Most of this is done by phone appointments and labs my specialist orders and I have done locally. Irregular treatment would not give me the on-going management I need to stay functioning at the level I do now.

As far a cost is concerned, I'm finding it to be cheaper and less physically demanding to travel by air to see my specialist once or twice a year than to try working with my local doctors. I wasted SO much money and energy seeing local cardiologists, endocrinologists, GPs, etc who charged me lots of money and did nothing for me. It was also physically and mentally exhausting to make trip after trip after trip and get nothing but insults. A well-planned trip by plane once a year turns out to be less physically demanding than repeated trips to local doctors.

My specialist costs no more than my local doctors and is covered by my insurance, so there's no extra cost there. Most of the labs are covered by insurance as well. The cost of the few labs that aren't covered is more than made up for by not paying local doctors over and over. In fact, last year my husband's medical expenses were higher than my daughter's or mine and he doesn't have ME!

Right now, the biggest out-of-pocket cost related to ME is supplements which are not covered by insurance. My specialist tries to avoid recommending those any more than necessary, but sometimes there isn't an insurance-covered medication that accomplishes the same thing. For example, I've been on and off low doses of Equilibrant. I'm better on it than off it, so I take it. My daughter's NK cell function stays normal with inosine, so it's worth paying for. I wouldn't be able to work full-time without CoQ10, so I choose to pay for it in order to be able to support myself. None of these supplements are cornerstones to my specialist's treatment plan. If I couldn't (or chose not to) afford them, she would do her best to find ways to help that I could afford.

All that said, ME/CFS specialist treatment is not a magical cure for me. It's a very, very delicate balancing act to keep all my symptoms under control sufficiently for me to have a rough semblance of normal life -- support myself (if not at the level I could pre-ME), take care of myself and my home (with definite limitations), and interact with my family and friends. If I don't keep up with all my treatments/management religiously, or if I catch something, it can all come crashing down. I don't fall back to long-term bedbound; I am past that. But not keeping up with my hydration protocol, missing medications (or some supplements), not staying within my (new) energy envelope, straying significantly from my diet, can be a disaster. I can't keep up with my work, am back in bed by mid-late afternoon, and need a wheelchair outside the home.

I'm grateful that my specialist is willing to work with me to tweak every little thing to allow me to walk this tightrope of relatively normal function, but I'm under no illusion that I've beaten ME or that I am free to do what healthy people do. I'm willing to perform this balancing act because I want to be able to think straight, support myself (after a fashion), and take care of my ADLs as much as possible. If this is what it takes to function as 'well' as I am now, I'll do it as long as I am able, but I'm not going to pretend it's easy or that I'm not aware every waking minute of the limitations ME imposes on my life.

Thank you, @SOC ! All of your specifics about travel, how symptoms decreased in severity/what helped them and finding your way out of being homebound are invaluable. Especially to me, being currently homebound. The thought of getting beyond being homebound is...I don't even have the words for it. My life has become so small. I'm sure there are others who will find your post extremely useful. This thread is a goldmine of info.

In light of the current doctor/treatment access for patients, your shared knowledge becomes that much more important. Though every patient is different, your detailing OI treatment, antivirals, Equilibriant and COQ10 successes was of potential great help to others. When my GI system was better, COQ1O was one of the supplements I took, but never at those high levels. I know those potential crash-inducing infections you mentioned are a factor in my case, too. It's fortunate that your specialist has been able to attack so many different aspects of the ME/CFS, instead of you having to run around to individual specialists, which can be exhausting, expensive and worsen the disease, itself.

What's also key in your info is the realistic expectations and the ongoing management you have to undertake in order to keep your disease symptoms at functional levels. Also interesting is the difference in response times and outcomes between you and your daughter. What we all want is for all patients to be able to access this type of personalized treatment, but localized, to minimize the physical and other costs we pay. Continued good luck (though hard work) in your treatment and illness management.

 

[oceiv]

I really appreciate the continued poll and/or discussion participation. So far over 56% are not getting ME treatment from any doctor or only get treated for non-ME health issues. Only 11% get regular treatment from an expert. Another 11% get irregular treatment from an expert. Lots of other interesting poll data, but I though I'd highlight some (or should I say "lowlight" some?).

I am 25 and have been sick (borderline housebound) since the age of 15. I have no help with my ME/CFS from any doctor. My GP accepts that I'm ill and supports benefit applications etc. But with regards to treatment just pretty much shrugs and tells me that my tests are normal, I should do more activity and I should try anti depressants 'because they will help all my symptoms'. My cardiologist was ridiculously dismissive. I have never seen a neuro, rheum, immunologist, or anyone else with an interest in this illness.

I ticked that 'I only get help for my non ME/CFS symptoms' but actually, most are interlinked and none of my symptoms are actually under control.

:|

I feel so incredibly let down by the NHS and every doctor that I've met. I am beyond envious of those who are able to travel to see specialists. You should count yourself very lucky.

@Apple , this is a daunting and grim medical reality you have faced for far too long! It shouldn't be this way. The medical dismissive attitudes and downright abandonment is both painful and harmful. Your observation about symptoms being interlinked is essential. We and our illness can't really be broken down into separate specialities. The illness causes symptoms in many systems. Doctors who do deign to treat us want our neuro problems to be separate from our cardiology symptoms, which would then be separate from our exhaustion. It's just not so. When doctors know too little, refuse to know more and are overwhelmed by our disease, they then shift the responsibility for getting well onto us, the patients. There is a purposeful level of ignorance to be able to push the one thing we know makes us worse - increase activity.

You deserve more. We all do. The NHS and medical establishment should be let down by their own behavior. I hope that our voices continue to grow louder as we all come together on these doctor/treatment issues. I hope you will finally be able to access meaningful care.

I'd estimate that 80% of the time when I go to the doctor it is because of sinus issues. I don't even mention CFS anymore as I have yet to find a doctor around here who knows anything about it. I must admit though that I sometimes wonder if my sinus issues and CFS are one and the same?? I can't help but wonder some days if I was able to cure one if it would automatically cure the other.

It's nuts that too many of us have to hide our ME/CFS in order to get care. It's inexcusable that you can't get care being who you really are - someone suffering from ME/CFS. Hiding shouldn't be a requirement of care. Sinus infections are a big and perhaps as you say, integral part of this disease. When I had doctor and PT access, these symptoms were at least a bit more under control. My last sinus infection never went away. You only going for sinus care, when it is really just one symptom of a larger cause is part of what needs to be corrected. I wish you a better medical reality, soon.

It's so important for us to share our stories.

 

[oceiv]

Yes, autonomic are a huge issue with traveling. And I also was prescribed LDN locally and this also made traveling much easier.

When I first traveled it meant a 17 hour flight to another country. I always use the airline wheelchair service, and credit card miles. When I traveled overseas I scheduled my arrival for several days before my appointment in order to have recovery time, and scheduled a saline IV after the big blood draw to ease the return flight. Now I am able to see the same specialist in my own country with just a 4 hour flight. For these trips I carry almost all my own food to avoid struggling with restaurant food and having to leave my hotel room in order to eat. In between face-to-face visits, I have phone consults.

Ditto, no cure but careful management of symptoms, and treating the ME manifestations in a sensible order really does help with functioning. My doc also keeps up with all the emerging research and is willing to try protocols whenever the risk/benefit ratio is in my favor.

Thank you! These specific coping strategies for travel will no doubt reach someone who really needs them and may help them get to care. Whether now in this thread or in future searches. Suggestions like these are without price.

Good pain relief for such very heightened activities is essential. I used to get Ultram for this purpose, but the doctor who prescribed it moved to another state and field. Very smart about the credit card miles. I would have never thought about the IV, especially with the vein problems (I saw in another recent thread) that we share. 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). Also useful was searching out gluten-free restaurants - sometimes they provide meals free of allergens, too.

Keeping up with research and trying things seems to be two major areas of difference between ME/CFS experts and other doctors. These two traits can mean the difference between symptom control and none, whatsoever. It all starts with a belief that we are seriously ill and therefore deserve serious treatments. The belief and the education underlie our problems, but also sometimes as with other illnesses and disabilities to which doctors previously did not want to respond, things like congressional laws need to be implemented to protect the sick. For example, the ADA.

 

[taniaaust1]

I have a lot of trouble getting to the surgery - its only 3 miles away but I cant drive and there is no public transport - plus I cant self propel my own wheelchair. My husband takes me, but getting appointments to work around his job is very hard. Sometimes a neighbour takes me. I cant always go as often as I would need due to energy expenditure issues - especially as its usually a wait in the surgery for an hour at least everytime, sitting surrounded by people coughing and sneezing.

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.

 

[taniaaust1]

I'd estimate that 80% of the time when I go to the doctor it is because of sinus issues. I don't even mention CFS anymore as I have yet to find a doctor around here who knows anything about it. I must admit though that I sometimes wonder if my sinus issues and CFS are one and the same?? I can't help but wonder some days if I was able to cure one if it would automatically cure the other.

An Australian ME/CFS study found that we often can have a toxin producing nasal staph (unlike the 25% of the normal population who sometimes have nasal staph but don't have a toxin producing kind). This can cause sinusitis issues. I suggest to see if you can have a nasal swab done to see if you have nasal staph and if so have this treated.

 

[taniaaust1]

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.

 

[TigerLilea]

Thought about food allergies? I didn't think I had any, and I may not by conventional standards, but my sinus issues and ear congestion improved once I cut out gluten and dairy on the advice of my specialist. I confess to resisting the dietary change since I have no gut issues and didn't think I had any food allergies. Once again, the doctor was right and I was wrong.

For the first time in the 24 years that I have been going through CFS and sinus issues, two different doctors this year have both told me that they think there could be allergies involved. Of the six ENTs that I have seen over the years, not one single one of them has ever mentioned the possibility of allergies. I have had allergy testing done four times over the years because I do have a drippy nose, however, all testing came back negative.

I, too, have been very resistant to consider dietary changes as I don't have any symptoms of gut issues. Plus the thought of not having cheese ever again is very depressing. I absolutely love cheese! According to Dr. Mark Hyman it is possible sometimes for some people to reset their bodies by giving up an offending food for three months and then reintroducing it into their diet. Right now I'm researching the different elimination diets as everyone seems to have a different opinion as to what should be restricted and for how long.

 

[TigerLilea]

An Australian ME/CFS study found that we often can have a toxin producing nasal staph (unlike the 25% of the normal population who sometimes have nasal staph but don't have a toxin producing kind). This can cause sinusitis issues. I suggest to see if you can have a nasal swab done to see if you have nasal staph and if so have this treated.

I tried to get an ENT to do a nasal swab and he refused to do it. According to him I would have to be put under in an operating room in order to get a sample. He said it was impossible to get a viable sample any other way.

 

[SOC]

Plus the thought of not having cheese ever again is very depressing. I absolutely love cheese!

I know! I really miss cheese. But now I know that it makes me congested and makes my ears hurt, it's easier to do without. I don't like it, but I now understand the consequences.

According to Dr. Mark Hyman it is possible sometimes for some people to reset their bodies by giving up an offending food for three months and then reintroducing it into their diet. Right now I'm researching the different elimination diets as everyone seems to have a different opinion as to what should be restricted and for how long.

My specialist just put us on a 4-day rotation diet, which sadly seems to be helping a little, so I guess I'm going to stick with it longer even though it's a major pain. It has not, however, allowed me to eat dairy without consequences. It hasn't been three months yet, however, so maybe there's hope.

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