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

[barbc56]

But it should be borne in mine that there is scientific evidence behind many treatments that are classified by some as 'complementary' or 'alternative'. That's why I say that differentiating between natural treatments and pharmaceutical or surgical ones on the grounds of evidence is spurious

Great data base. I have it bookmarked!

To me, if there is solid science behind treatments whether supplements or not, they would fall under science based medicine and not alternative medicine. I guess it's a matter of semantics.

Sorry @oceiv for getting OT. Interesting thread.

Barb

 

[oceiv]

What horrific situations so many here have been through. It's heartbreaking.

It truly is and emphasizes an urgent need for change on these issues. But the heartbreaking stories are each educational and need to be told. Equally important, they need to be heard and addressed by those in a position to do something to help.

All in all, I have been very very, knock on wood, fortunate to have relatively good medical care, even with a few bumps along the way. That's the short version.

I checked, Yes. I'm getting regular treatment from a doctor, not an ME/CFS expert, but I'm not sure if that's technically correct.

I live in the states and though I originally had a diagnosis of CFS and Fibromyalgia, it turned out it was only with the first doctor I saw after getting sick. When I moved, I had to switch doctors and until several years later, didn’t realize the CFS had been dropped but the Fibromyalgia diagnosis remained. This reflects the fact that at the time CFS was rarely used as a diagnosis. In some ways, but only some, I think it's worked to my advantage.

This is my present situation. I have a PCP who sees a lot of FM patients and she's very knowledgeable about FM and it's comordid conditions. I also see a neurologist for the FM, pain management as well as sleep related issues.

So I'm not sure if the fact that my neurologist specializes in FM and Sleep Medicine really counts as a true me/cfs specialist in the strict sense of the word compared to others such as Dr. Klimas. That's why I chose the above answer.

I can change my answer if necessary.

You bring up a really interesting point, @barbc56 . It does seem plausible (maybe even likely) that leaving out the ME/CFS diagnosis helped you get the care you've gotten. It's wonderful that you have been able to keep your illness managed and treated by two good specialists for your co-morbid conditions. From the poll, it seems there are a number of people in somewhat similar situations. The local care I had gotten was also just for co-morbid conditions. In my case, those docs weren't enough to manage my ME/CFS, so I suspect that poll answer is perhaps divided between people in your good treatment situation and my insufficient, previous treatment scenario.

What's also interesting is your neurologist's specialty. He or she might be the difference-maker, because of the sleep focus and treatment.

Your post made wonder, what would happen if a study was done on whether patients who have similar symptoms would get treated differently by doctors according to whether they come in with an FMS or ME/CFS diagnosis? I know FMS patients do have some of the same doctor problems ME/CFS patients have, but the disease seems to have gained in legitimacy while ME/CFS's legitimacy has stagnated for too long.

 

[barbc56]

that leaving out the ME/CFS diagnosis helped you get the care you've gotten. It's wonderful that you have been able to keep your illness managed and treated by two good specialists for your co-morbid conditions

Well, I would say managing as much as medically possible which hasn't been paicularly good the last year or so. That's not necessarily a doctor or medical system flaw but just comes with the territory.

FM has been getting better recognition. Unfortunately, me/cfs lags too far behind.

Your idea for a study really sounds intriguing and I would think it would make a difference.

I think going to a specialist can be like the story of the blind men describing an elephant. Especially if the doctors aren't working as a team. Fortunately, mine do and so it's worked out. I think the biggest hurdle, at least in my case, has been who is prescribing which medications.

Barb

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[oceiv]

Sorry to hear about your tough last year. This illness does tend to have mysterious twists and turns. Here's hoping that you and your docs find an effective treatment for your recent health woes. Or that you find a good idea here on PR and bring it to them.

Your idea for a study really sounds intriguing and I would think it would make a difference.

If I were independently wealthy, I would arrange it in a heartbeat. Not sure that it could be done on the new patient-driven study site, Mendus.

I think going to a specialist can be like the story of the blind men describing an elephant. Especially if the doctors aren't working as a team. Fortunately, mine do and so it's worked out. I think the biggest hurdle, at least in my case, has been who is prescribing which medications.

Very funny, @barbc56 ! Earlier in the thread, I referred to that same parable when talking about specialists treating ME/CFS . It really is nice talking with others who understand. Uncoordinated specialists, though a problem in many illnesses today, puts an extra strain on ME/CFS patients, due to the extreme energy drain of having duplicate tests, relaying duplicate patient history and doing the coordinating, onself, among other things.

I just noticed your quote and love it. Learning is very much going on here in this discussion. I hope we can soon have our conversation reflected in the governmental and medical halls of halls of power

 

[oceiv]

Apologies I don't know how to type into the quote - if I do will it keep the quote separate, or will my bit end up merged in with it? Anyway, I will type at the bottom for this one.....

Unfortunately the specialist only sent me one prescription for the Immunovir and then retired. I took it for around 6 weeks with no change either way, and then suddenly got a virus (ironic) that gave me vertigo. I had never had it before and was rather scared and thought it might be linked with the Immunovir so stopped taking it. Thinking now, I should have gone to my GP and showed her the specialist's letter and tried to get it from her, but at the time I went off on another tack - trying Low Dose Naltrexone, but that's another failed experiment. Anyway, my immune system has improved a lot since that point, through trying other methods (principally herbal treatment and getting adrenal support).

With regard to the change in attitudes, it may only be a small point, but from what I can see at the time, much of the medical profession in our county would have been very dubious about the reality of ME/CFS as a physical condition. I know that this specialist used to give talks around the county and was known to the GPs for referrals, and they would have learnt a bit more via him than they knew before.

Even so, though he was an immunologist he would have been bound by (and even contributed to) our UK NICE guidelines on CFS, so 'treatment' was limited to GET or CBT, but I was never offered either actually and would have refused them. However it was obvious he personally did think outside the box to some extent, given that he was willing to trial Immunovir, and also he had done some research on cytokines apparently. Unfortunately I only found out about the Immunovir from someone else, and wrote to him about it. Maybe he kept it under the radar somewhat.

His biggest help for me was to write fantastically supportive letters to help me get on and stay on disability benefits so that I didn't need to go back to work when I had a relapse. Luckily I am retired now, but we don't have health insurance as such in the UK - we get free medical treatment from our National Health Service, which can be very good for some conditions, but awful for others (ie especially chronic ones).

All doctors here are limited too in what help they can give by the bigger picture above them ie some things have to be referred upwards, and things that would be routine in other countries like having an FT3 blood test for the thyroid are not always possible now, and have to be done privately. Also getting any other thyroid treatment other than Thyroxine is getting very difficult too though I have been luckier with that one than most due to my supportive GP.

No worries about the quote. To break up the quote, what you need to do is type [ / Quote ] without the spaces, at the point you'd like to break. For example (I'm going to type it with spaces so that you see the code):

[ QUOTE = "mermaid, post: 591639, member: 510" ] Point One [ / Quote ]

Reply to Point One.

Then copy and paste the quote code with the username and either use the existing [ / Quote ] or if you break up the post a few times, add one, like so (without the spaces):

[ QUOTE = "mermaid, post: 591639, member: 510" ] Point Two [ / Quote ]

Reply to Point Two.
​

Your hesitation with Immunovir seems perfectly understandable, given the viral illness. As each patient reacts differently to medication, it might have been that Immunovir wasn't the one for you. Great to hear that you found a different route to treat your immune system. I'm curious about the herbs you used, if you're okay with sharing. My infections are definitely one of my biggest problems.

Educational lectures from specialists do sound like an important factor. Both Dr. Peterson and Dr. Bell are giving such talks soon. It helps for info to be coming from a doctor for people who readily dismiss the same info from patients. I know our docs are overburdened, as it is, but this personal touch seems to have more impact.

It's a shame that your doc still had to stay somewhat in the system wrt the guidelines. Imagine the change that could happen otherwise. Like @MeSci said:

Pinching was formerly a pioneering specialist in AIDS. Imagine if he had headed an AIDS clinic where all that was on offer was CBT/GET...

Profound, the differences.

Still, you were smart and lucky to have gotten the support regarding disability. One doc who believes in us and our illness can have great effect in getting our bodies the rest we need.

 

[barbc56]

Very funny, @barbc56 ! Earlier in the thread, I referred to that same parable when talking about specialists treating ME/CFS

I either missed that or it's wandering around the nether regions of my brain!

Barb

ETA
The link didn’t work for me. What page?

FOUND IT!

 

[oceiv]

I either missed that or it's wandering around the nether regions of my brain!

Barb

ETA
The link didn’t work for me. What page?

FOUND IT!

I have no idea what that link was. All fixed, now.

 

[mermaid]

No worries about the quote. To break up the quote, what you need to do is type [ / Quote ] without the spaces, at the point you'd like to break. For example (I'm going to type it with spaces so that you see the code):

[ QUOTE = "mermaid, post: 591639, member: 510" ] Point One [ / Quote ]

Reply to Point One.

Then copy and paste the quote code with the username and either use the existing [ / Quote ] or if you break up the post a few times, add one, like so (without the spaces):

[ QUOTE = "mermaid, post: 591639, member: 510" ] Point Two [ / Quote ]

Reply to Point Two.
​

Your hesitation with Immunovir seems perfectly understandable, given the viral illness. As each patient reacts differently to medication, it might have been that Immunovir wasn't the one for you. Great to hear that you found a different route to treat your immune system. I'm curious about the herbs you used, if you're okay with sharing. My infections are definitely one of my biggest problems.

Educational lectures from specialists do sound like an important factor. Both Dr. Peterson and Dr. Bell are giving such talks soon. It helps for info to be coming from a doctor for people who readily dismiss the same info from patients. I know our docs are overburdened, as it is, but this personal touch seems to have more impact.

It's a shame that your doc still had to stay somewhat in the system wrt the guidelines. Imagine the change that could happen otherwise. Like @MeSci said:



Profound, the differences.

Still, you were smart and lucky to have gotten the support regarding disability. One doc who believes in us and our illness can have great effect in getting our bodies the rest we need.

Thank you for explaining the quote thing. I think I understand it now, but I am not testing it out this time!

No problem with sharing about the herbs, but I don't think it was that simple. I had a series of tests done around 2 years ago via the Acumen Lab in the UK (used by Dr Myhill and others) - these included Blood Metallothionein studies, and Lymphocyte Sensitivity Tests, and Toxic effects of chemicals, and DNA adducts and was being treated accordingly. I think perhaps that as well as targeted supplements may have had more impact over time (around 18 mths) in improving things than I realised as my immune issues have slowly improved, even though much else hasn't. I was seeing a private Dr at the time, but have stopped now as he was a very long way away, and also v expensive.

However, I do also use Oil of Oregano, and find it very helpful for calming down immune issues that I get from time to time, and have used it for a while now. I don't use it all the time as it's so powerful it can knock out the good bugs as well as the bad ones, but if I feel I have 'something coming on' then I use it for several days, 2 or 3 times a day.

Over this last winter I have been seeing a medical herbalist, and she has used a variety of herbs to support me, but of course that varies so much depending on the person. One herb she uses on me is Astragalus, and she says that's good for people with autoimmune conditions - a suitable adaptogen, but generally there are around 5 herbs in the mix.