Poll How Well Informed Was the Last Doctor You Saw?

[Linda B]

In australia even if your gp is well informed on cfs/me, they are restricted by the health department on amount of testing and what types. Some medications such as antivirals are not covered by PBS so have to be bought on a private prescription which increases the cost greatly. If a gp is seen to be doing too much testing they are warned to back off by the health system mostly due to cost.

With viral testing, we just cant get titres measured so just igm or igg. If u test positive igm to a virus they say oh you have a recent infection you will get over, just rest up. if you test igg to a virus then they say oh thats just an old infection, nothing to worry about, even though you may still have viral symptoms. I think there may be some politics in not giving titre levels because they would find many with high titres, meaning viral reactivation and would have to treat with appropriate antivirals, which are expensive long term compared to many other types of treatments.

Lyme and other bacterial infections are the same as the above scenario as viral infections. Long term treatment with antibiotics or treatment with stronger IV antibiotics is expensive. they just dont want to pay the money. Drs that are seem prescribing abx in a way like they are treating lyme etc are given a warning and harshly dealt with.

I think the govt realize that alot of people in australia have chronic illnesses like cfs/me and lyme and are just counting the cost of treatment, which they dont want to spend. Theres no real thought into pain and suffering. If they were really concerned about the economy etc then they would actually help pay for these treatments and do proper testing. Effective treatments would get many people functioning better and able to work, so they are self sufficient and paying taxes.

So i think many dr's just toe the line on what the health department/govt say and the other drs who do understand cfs/me are just very restricted in what they can do. Atleast here in australia a good doctor can atleast help treat you symptomatically for pain and sleep problems and help rule out other illnesses, which seems alot more then what people are getting in the UK.

I think it will probably stay like this until there is a definitive way to test one, which would include actual biomarkers such as nk function and cytokine testing and similar testing.

Hi,
I agree that the gov does certainly (and seriously) need to keep a rein on health care costs due to inordinate amounts of testing, but I would say that once diagnosed by doctors with an ongoing chronic disease such as CFS then there could be some latitude given for necessary testing. CFS is something one acquires ...it does not commence through poor habits, but by bad luck mostly! Comparatively many Type 2 diabetics have acquired a disease usually through a life time of poor health behaviours yet the government bends over backwards to provide them with dietary advice, subsidised medications, free testers and associated paraphernalia and regular bloods to monitor their health. Life is not fair....I know.... But sometimes the logic is just beyond the pale.
I would also add that the doctor has not canvassed either antibiotics or antivirals .... Even with the concept of us paying out of pocket, which we would seriously consider IF he thought it a very good chance of helping. My daughter tested positive for CMV and I know (though not tested) she will have hhv6 due to a bout of Roseola as a child. The doctor has not ever followed this path. But I suppose he knows better than me!

 

[Strike me lucky]

Hi,
I agree that the gov does certainly (and seriously) need to keep a rein on health care costs due to inordinate amounts of testing, but I would say that once diagnosed by doctors with an ongoing chronic disease such as CFS then there could be some latitude given for necessary testing. CFS is something one acquires ...it does not commence through poor habits, but by bad luck mostly! Comparatively many Type 2 diabetics have acquired a disease usually through a life time of poor health behaviours yet the government bends over backwards to provide them with dietary advice, subsidised medications, free testers and associated paraphernalia and regular bloods to monitor their health. Life is not fair....I know.... But sometimes the logic is just beyond the pale.
I would also add that the doctor has not canvassed either antibiotics or antivirals .... Even with the concept of us paying out of pocket, which we would seriously consider IF he thought it a very good chance of helping. My daughter tested positive for CMV and I know (though not tested) she will have hhv6 due to a bout of Roseola as a child. The doctor has not ever followed this path. But I suppose he knows better than me!

With my doctor, the last few years has played by the book but when i bring something up or suggest a treatment he is very helpful. I have a feeling that they cant really suggest off label type treatments especially something like for cfs/me that isnt really recognized or has recognized treatments. We could be talking about the same dr too?? I know of people who have seen him and have said to me that he didnt offer antivirals or some other off label treatments they were expecting. I have found i just have to step up to the plate and ask. Even ask him questions like have u treated anyone with antivirals, he will tell me yes or no or sometimes that a certain treatment is risky or just tell me its not looked at kindly by the health system. Asking him questions like that usually leads into asking him about trying a certain treatment or doing certain tests.

This is what i think or how i work is that i take it that my dr is working with me. He is very understanding and knowledgeable when i bring something up even a few things i didnt think he would know much about, so he has suprised me often like that. I do alot of my own research, then go to my dr and say whats your opinion of this, is there any other options? I find it works well compared to some doctors that dont like patients being proactive about their own health.

At the end of the day no doctor has the answer but we need someone to work with us and try things within certain reasons.

 

[Linda B]

With my doctor, the last few years has played by the book but when i bring something up or suggest a treatment he is very helpful. I have a feeling that they cant really suggest off label type treatments especially something like for cfs/me that isnt really recognized or has recognized treatments. We could be talking about the same dr too?? I know of people who have seen him and have said to me that he didnt offer antivirals or some other off label treatments they were expecting. I have found i just have to step up to the plate and ask. Even ask him questions like have u treated anyone with antivirals, he will tell me yes or no or sometimes that a certain treatment is risky or just tell me its not looked at kindly by the health system. Asking him questions like that usually leads into asking him about trying a certain treatment or doing certain tests.

This is what i think or how i work is that i take it that my dr is working with me. He is very understanding and knowledgeable when i bring something up even a few things i didnt think he would know much about, so he has suprised me often like that. I do alot of my own research, then go to my dr and say whats your opinion of this, is there any other options? I find it works well compared to some doctors that dont like patients being proactive about their own health.

At the end of the day no doctor has the answer but we need someone to work with us and try things within certain reasons.

Thanks, well said! and I agree the system does place restrictions upon doctors, which in the overall is really a necessary and good thing. I shall try to be more proactive in my 'asking'. It's just after so long of dealing with various doctors , and without any med qualifications myself, I am looking/hoping for more direction from the person I pay the bucks to. (And boy haven't we paid a lot of those over 6 years.)
Here's hoping I can get ahead in this situation. I tie myself in knots looking for a direction to help improve health. Cheers.
Linda

 

[Strike me lucky]

Thanks, well said! and I agree the system does place restrictions upon doctors, which in the overall is really a necessary and good thing. I shall try to be more proactive in my 'asking'. It's just after so long of dealing with various doctors , and without any med qualifications myself, I am looking/hoping for more direction from the person I pay the bucks to. (And boy haven't we paid a lot of those over 6 years.)
Here's hoping I can get ahead in this situation. I tie myself in knots looking for a direction to help improve health. Cheers.
Linda

Google the cfs road map. It can help with testing mostly although some things aren't available in Australia but its a good guide.

lymphocyte subset test can be handy to get. It can show immune dysfunction and nk numbers but not nk function unfortunately. Also cd8 t cell counts(apart of lymphocyte subset test) can be a guide to herpes viruses like ebv/cmv/hhv6 reactivating in us. Generally viral titre numbers are an indication but arent given here in oz. Getting all the herpes tests is helpful to know which herpes viruses u have had and the cd8 can give a hint to us that its an ongoing problem.

Cheers

 

[Who Me?]

Imo only CFS ME SEID specialist will be really proactive with treatment Because that is their area of expertise

If I hear of something new that I want to try that requires an rx, I approach my doctor about it. She is more knowledgeable than most but not a specialist so she can't be up on everything. I spend more time in the forums than she does and she trusts me.


Note to newbies. Please put a lot of paragraph breaks in your posts. Many of us with neuro and cog issues cannot read that much text 2-3 sentences at most without a break is all my brain can handle. Thanks

 

[kim.der.acquiro]

I moved from Phoenix, AZ to Salt Lake City, UT in 2012. My sister and I both have CFS (CFIDS) & FM. We had an excellent specialist (Philip Rubin, MD) from 1990-1996 in Phoenix, when he closed his practice. (Oddly enough, my sister saw one of his partners first. He told her to go off all her medication, and she crashed HARD. During that time we also briefly had two primary care doctor that also used alternative medicine, but they were only available for a short time. We tried another primary care who said she treated CFS, but she was useless.
Since moving to SLC we're on our third primary care. The first one literally laughed in our faces, muttering something about mouse virus, and that was the end of that conversation. The second one took, and supposedly read, articles from Health Rising. He said they were "interesting", and that was the end of that conversation. I just started with the third one. I went armed with documentation. She wouldn't even look at it.
We thought we'd be able to go to Lucinda Bateman, MD now that we are in SLC. I've been on her waiting list for 2 years now. I've been in bed for those two years because of fatigue and pain. Her office gave me some other doctors I could try, but they all get dreadful ratings at HealthGrades.com, particularly in the category of how well they listen. I've been through the list at fmcfsme.com/. Of the 8 doctors they list, 3 apparently don't exist any longer. Of the other 5, only Dr. Bateman gets reasonable ratings, but it's extremely difficult to get in to see her. She begins her relationship with new patients by forcing an exhaustion collapse on them (requiring that they do 2 2-hour appointments within 2 days of each other). As many of you probably already know, Dr. Bateman gives a lot of speeches trying to spread recognition of CFS. I emailed her office and suggested that she might do some work with doctors here in the Valley, but to no avail.
I'm also having some gastroenterology issues, so I went to a gastroenterologist. I took a list of my supplements and herbals, many of which I am taking for CFS & FM. He had a fit and told me I should quit taking them.
I'm also having some MS-like symptoms. I had two appointments with an autoimmune neurologist. I took her some articles from Health Rising. She said none of the studies were published in peer-reviewed journals, so she wouldn't accept any of the findings or treatment suggestions.
I'm also having Sjögren's Syndrome symptoms, some severe. Getting that diagnosed and treated is equally difficult.

 

[Julie]

View attachment 259

This is kind of a quick look at how informed the doctors you see are about ME/CFS or FM. It asks how well informed was the last doctor you saw for ME/CFS/FM or for a symptom associated with ME/CFS/FM?

For a quick bonus say what kind of doctor you saw - primary care, specialist rheumatologist, neurologist), alternative health (acupuncture, etc.)????

• Also please consider adding your doctor to our Doctor Review section and reviewing them to help others find good doctors (and stay away from bad ones).

Owww! Last 18 years seen almost every type of Dr known to man. No one could help. Finally got smart and am now saving a ton of money and I asked my GP if he could prescribe the 3 medications I am now on. Because it is not out of the norm for many other diseases would take he said ok. It's only tramadol, gabapentin and Cymbalta. As soon and I here of something new that may work I'll go to a specialist again. Don't mean to sound pessimistic but that may take a long time. In the mean time I research, join sites like this and try to survive.

 

[Who Me?]

What about antivirals? thats pretty standard for CFS/ME/SEIDS/PENIS (lol) now.

@Cort @kim.der.acquiro PLEASE put your posts in smaller paragraphs. I and others cannot read that because too much text together screws with our brains. It doesn't have to make sense where you put the breaks. We just need them

 

[WhyWhyWhy]

How informed was my doctor? He told me I couldn't feel better from homeopathy because it was just sugar and water. He kind of said I was nuts. I kind of told him to F.O. because I do feel better -- lots better. I haven't been taken seriously since my days of coffee enemas. Had a bowel perforation. Got accused of being nuts for doing enemas. They did nothing for me except almost kill me. I can see why doctors think I am nuts but really why can't they give me information of what I should do. Why should I have to rely on the internet and crazy people with their crazy treatments. You just can't win.

 

[Who Me?]

If it was that easy, finding someone who could help, we wouldn't be complaining about it. If you look around you will see many of us treat ourselves in any way we can. This place and others are littered with people who were told they were nuts, stuff is crap, blah blah blah.

If you sit around and wait for a doctor to help you're going to be sitting for a long time. I don't mean to be harsh but that is the reality. You've been sick for a long time so I don't know why this is a surprise to you.

I find the more proactive I am in helping myself the less of a victim I feel. Start looking for stuff and help yourself!

 

[WhyWhyWhy]

If it was that easy, finding someone who could help, we wouldn't be complaining about it. If you look around you will see many of us treat ourselves in any way we can. This place and others are littered with people who were told they were nuts, stuff is crap, blah blah blah.

If you sit around and wait for a doctor to help you're going to be sitting for a long time. I don't mean to be harsh but that is the reality. You've been sick for a long time so I don't know why this is a surprise to you.

I find the more proactive I am in helping myself the less of a victim I feel. Start looking for stuff and help yourself!

The question was about the last doctor seen, wasn't it and I gave my experience with that one.

I have been doing the looking for stuff that helps. In fact, I have spent 10's of thousands of £'s doing all sorts of testing, alternative therapy kinds of things and really it's all been a waste of money. It either had no effect or made me worse.

I didn't join here for harshness and this kind of bullshit response. I know the realities of it all. Who died and left you the arbiter of who is a victim or not. I am no victim and I don't appreciate your condescending attitude.

I thought this forum would have real value, I guess not.

 

[Who Me?]

I clearly thought from this and your previous post that you were just now struggling to find help in spite of being sick for years. I didn't mean to give you a bullshit response or be mean.

If you read my response I said when I do things for myself I don't feel like a victim. I never called you a victim.


And if I did sound mean (and you cant tell tone of voice in print) it wasn't intentional, unlike your response to me.

 

[WhyWhyWhy]

Just being honest. You made me feel horrible.

 

[Who Me?]

As I said, you cant tell tone of voice in a message. You read my general statement and took it personally and entirely different than my intent which was frustration. Your comments on the other hand where intentionally hurtful and mean.

 

[LondonPots]

Hi @WhyWhyWhy

Please don't give up on this forum - we're all tired and cranky all the time, I think, and it can sometimes come out in the phrasing. I'm sometimes horrified by the tone of things I write, when I look at my posts again - far away from what I meant and just reflecting my constant headache or irritability.

 

[Recliner]

My doctor is a fibromyalgia / rheumatologist specialist and the best in town!
I rarely see the doctor, maybe once a year. I usually see the physician's assistant. none of them keep up to date with any of the new studies or research!! Whenever I mention anything that I've read off this site or wish to try some medication or therapy or treatment that I've read here, it is met with much resistance and I am never allowed to follow through with it in the end.

 

[TigerLilea]

[QUOTE="Linda B, post: 2750, member: 289"He did not even realise the site name had changed from Phoenix Rising....so, how well does he keep up!! [/QUOTE]
Linda, Phoenix Rising is a different group to this one. There is a doctor that posts over at PR on a regular basis, I just can't think of his name right now.

 

[TigerLilea]

I didn't join here for harshness and this kind of bullshit response. I know the realities of it all. Who died and left you the arbiter of who is a victim or not. I am no victim and I don't appreciate your condescending attitude.

I thought this forum would have real value, I guess not.

WhyWhyWhy, this forum does have real value. This is just one person's opinion - not the opinion of the entire forum.

 

[Simone]

Hi Linda,
Sorry,TCM is Traditional Chinese Medicine. I've used it for years (prior to my ME/CFS relpase) to manage gynaecological issues. Since relapsing, I still use it. My TCM herbalist knows my body well, so is very tuned in and tweaks the formula he gives me often. It's not been a cure but it has helped with symptoms like chest & epigatstric pains, air hunger, gastrointestinal symptoms and lifts my energy. I also use acupuncture which helps lifts my energy too.
Hope that helps

 

[Peyton]

How informed is my PCP? About as informed as time and energy allow me to help him become informed.
I've seen a myriad of specialists (I don't mean ME/CFS specialists) for various conditions throughout the 16 years I've been ill. Not a single doctor has ever said anything unkind or disbelieving about my being ill with ME/CFS. It's not that I hide it either. I am totally upfront about it. In fact, I probably mention it several times during a visit even if I am there for something unrelated.
I'm sorry for those who've had to deal with ignorant and callous doctors. I would be hard-pressed to simply not walk out the door right then and there and never look back.