How do you know when it is 'safe' to 'give up' on doctors/testing?

[dan062]

Hi folks,

I started a thread last week about my reluctance to accept the possibility of a CFS diagnosis because of a couple of aberrant lab tests. I now realize that lots of PWME have as many, or more, abnormal tests than I do.

It brought another question to mind which I couldn't find discussed previously and for that reason I thought merited a thread of its own (please delete this if there was such a thread which I couldn't find)

I'm sure that many of us have the gut feeling that something is seriously wrong with our bodies (and there is!), but we also have the concern, when we haven't received a better diagnosis than CFS, that the doctors could be missing something potentially treatable, like a clearly defined infectious disease (for which there is a curative treatment available), something which, if not diagnosed, could be rapidly fatal, or any other disease which we wouldn't want to miss.

For those of you that have stopped searching for answers, what made you decide that then was the right time to give up the diagnostic journey? Did you feel that there wasn't any more testing that you could have done, or specialists you could have seen?

Or, in the absence of answers from the medical establishment, did you feel the need to dedicate all your mental and financial resources towards trying to attempt to treat yourself? Did you run out of money to dedicate towards medical needs? Or did you simply become fed up with the whole rigmarole?

I'm in the 'want to move on towards looking to a cure' bracket, but there's still the gnawing feeling that I need some more testing (I've had relatively little beyond basic PCP level blood work).

 

[Gingergrrl]

I checked the first box in that I have accepted that I have a true ME/CFS diagnosis b/c I meet the CCC and ICC criteria and was diagnosed by a CFS specialist. He felt I had a "classic case" of re-activation of the EBV virus that led to my fatigue, autonomic issues, etc.

However, I do not view this as giving up on doctors or treatments and actually viewed this as a starting point of the beginning of my journey to get better. I also continue to see other specialists (cardiologist to treat the autonomic issues, endocrinologist to treat thyroid/Hashimoto's disease, etc) and am going to be seeing a functional medicine doctor in a few weeks since I do not have a PCP (GP) and need someone local for any other medical issues that could arise.

My CFS specialist continues to order testing as needed and I am open to absolutely anything that can be of help to me from prescription meds/anti-virals to supplements to IV saline, etc. If any doctor finds any other medical issues in addition to CFS, I will treat those as well. So for me it is more of an acceptance vs. giving up (although there have been many days where I felt hopeless and wanted to give up.)

 

[A.B.]

I would have voted: I have not stopped looking, but financial constraints combined with having ruled out most things means it's less of a priority. I feel it is irresponsible to stop looking for solutions, and at the same time, it is also irresponsible to speculatively test and treat everything. There has to be a healthy balance somewhere in the middle, which differs from person to person depending on how bad the situation is and how much resources (energy, money) one can invest, and how risky the resulting treatments are.

 

[Lou]

I haven't read your other thread so do not know the extent of your illness. That said, if you're on your feet, working, etc, then here's one sure fire way to rule out ME/CFS: go for a run. If it doesn't completely wipe you out, especially the next day and next day, then look for another cause of your illness.

The caution, of course, is that if you have ME/CFS (for that matter, some other diseases, too) the run could be quite bad for you.

I not trying to be funny here, it's what I decided to do long ago.

 

[xchocoholic]

I can't answer this because I haven't stopped looking for other causes of my me/cfs symptoms. If there were a biomarker specifically for me/cfs and I had that, then I'd accept me/cfs as a dx. But for now, me/cfs is just a group of symptoms.

I meet the ccc criteria and my dx is rock solid based on the list of symptoms used for dx. But so far most of my me/cfs symptoms have been or are being attributed to auto immune diseases. Pots has recently been added to the auto immune disease category.

As a celiac I can, and do, have a long list of auto immune diseases. The NIH states celiac disease is being misdiagnosed as cfs but I'm not exactly sure what criteria they used to determine that. The fact that so many of my me/cfs symptoms are gone via diet speaks volumes.

Fwiw, if you're asking if you should stop looking for other explanations for your me/cfs symptoms, I'd say no. Why stop looking ? What do you have to gain by accepting me/cfs as your dx vs looking for other causes ?

Hth ... x

 

[dan062]

If you're on your feet, working, etc, then here's one sure fire way to rule out ME/CFS: go for a run. If it doesn't completely wipe you out, especially the next day and next day, then look for another cause of your illness.

I don't think this would work for me. But I also didn't think that post exertion fatigue was necessary (?) for all types of ME/CFS. My sx are very much neurological (I don't have that pronounced fatigue, either) but they are classic ME, if you believe in the distinction.

 

[dan062]

If you're asking if you should stop looking for other explanations for your me/cfs symptoms, I'd say no. Why stop looking ? What do you have to gain by accepting me/cfs as your dx vs looking for other causes ?
Hth ... x

Good point. An ME/CFS has an uncertain prognosis, social stigma (completely unfair) and no access to proven treatment from the medical system.

But what's to gain by just accepting it as it is and moving on? I would propose all of the reasons in the poll, and I'm sure there are plenty more: a form of mental closure; money saved on medical expenses which could be used on things you actually enjoy (clothes, etc).

I also completely agree about the biomarker. If there were something more tangible than a diagnostic criteria, like a distinctive autoantibody, that we could point to and say 'I have this, so I have ME/CFS', -- even if that also implied no proven treatment, that would definitely stop me from looking further too.

 

[Gingergrrl]

I want to add something as I think I might have misinterpreted the initial question. I agree with those who said that ME/CFS is a collection of symptoms as there is currently no biomarker or cure. IMO to accept that I have met that collection of symptoms is not giving up nor is trying to find other potential causes and treatments giving up. I think both are equally valid and can actually be done simultaneously.

My new cardiologist put me in the hospital to rule out other causes of my cardiac symptoms before saying that they were all autonomic. I fully agreed to this b/c I was uncertain myself and so in a way I am pursuing both courses of action at the same time (accepting I have ME/CFS but pursuing any and all potentially valid treatments at the same time.)

I often do not even use the term ME/CFS when people ask me about my illness. I say that I have autonomic dysfunction which affects my heart rate and BP so I can only walk very short distances. They ask how this happened and I explained that I had a re-activation of EBV from severe mono in 2012. I find that people take this very seriously and do not dismiss it like when they hear the stigmatized term "CFS." But that does not change that I believe I have ME/CFS, it is just another way to explain it to people (as it pertains to my own case.)

My end goal is to get better and as all of us are here pursuing that together, I don't think any of us have given up. I also recently became involved with advocacy to help the End ME/CFS Project with their end goal to solve this illness once and for all and I feel hopeful for all of us that this will some day be figured out.

 

[dan062]

My end goal is to get better and as all of us are here pursuing that together, I don't think any of us have given up. I also recently became involved with advocacy to help the End ME/CFS Project with their end goal to solve this illness once and for all and I feel hopeful for all of us that this will some day be figured out.

That's my goal, too, and why I'm trying to see how you all managed to make the initial leap to stop, or lessen up on, the search for an answer beyond CFS/ME (I want to begin really focusing on getting this sorted).

I like your idea about explaining your illness. It's crazy that people will accept that as somehow valid enough not to impugn your mental health but not CFS. But I guess the name 'chronic fatigue' doesn't really get across what we experience and it does sound, to an 'outsider', as if it could just be a physical form of depression or some other psychosomatic disorder.

 

[Gingergrrl]

@dan062 I don't think I saw your prior post so not sure of all your symptoms but I would pursue each symptom until YOU feel satisfied with the answers you are receiving (which may be different for each of us on the poll.)

If a doctor is dismissing you as having CFS but you feel there is something else going on, I would pursue that gut instinct until you are satisfied. Hope that helps?

ETA are you in the US or another country?

 

[dan062]

@dan062 I don't think I saw your prior post so not sure of all your symptoms but I would pursue each symptom until YOU feel satisfied with the answers you are receiving (which may be different for each of us on the poll.)

If a doctor is dismissing you as having CFS but you feel there is something else going on, I would pursue that gut instinct until you are satisfied. Hope that helps?

It does. Thank you. But I only think there's 'something else' going on to the extent that I think that's true in all CFS cases: there's a pathogen undiscovered, an autoimmune disease undiagnosed, etc.

ETA are you in the US or another country?

Not in US. In Europe.

ETA: Interesting that financial constraints is now in the lead. Maybe there are a lot out there that have the CFS diagnosis but would keep digging if they had unlimited resources.

 

[steve b]

Everyone, here's a relatively inexpensive do-it-yourself test that may lead to a cure or great reduction in your CFS symptoms.

Go to the survivingmold.com website, take the online VCS (visual contrast sensitivity) test, then my time here is well spent.

I’ve been active on various CFS message boards since 1999 and ignored people like Eric Johnson (Mold Warrior) and others who’ve claimed most CFS is caused by mold. Earlier this year, as my CFS was progressing to Parkinson-like symptoms and dementia, I took the online VCS test. Mold and some other types of toxic exposures reduce this specific type of visual acuity. I tested positive on the VCS, finally got into a very low-mold house and am slowly recovering.

My best guess is that less than 20% of homes and workplaces in the northeastern US have a low enough mold count for a CFS / CIRS sufferer to gradually recover.

Here's a study of mold / mycotoxins in CFS patients.

Regards,
Steve Bullock

 

[Gingergrrl]

@dan062 the reason I asked where you are is that testing and treatment options vary so much from country to country and what is available. I had good health insurance until Oct so I tried to pursue as much as possible until I lost it. I've had to fight with insurance over a test that my cardio felt was essential whereas in other countries there are other obstacles.

 

[dan062]

@dan062 the reason I asked where you are is that testing and treatment options vary so much from country to country and what is available. I had good health insurance until Oct so I tried to pursue as much as possible until I lost it. I've had to fight with insurance over a test that my cardio felt was essential whereas in other countries there are other obstacles.

I'm actually moving country in a few months. Not for this reason, but it's a huge advantage to doing so (it's a plan I had made pre-CFS/ME, and I'm determined not to let this get in the way).
I'll have access to good health insurance and will be able to effectively start with things from scratch.
At the moment, here, it's literally impossible. Everything I could possibly try to test for (or scans) would be considered pre-existing and have to be covered out of pocket.
You were so right to get the testing done while you could. Not having (what you consider to be) important testing done creates huge anxiety.

 

[dan062]

Everyone, here's a relatively inexpensive do-it-yourself test that may lead to a cure or great reduction in your CFS symptoms.

Go to the survivingmold.com website, take the online VCS (visual contrast sensitivity) test, then my time here is well spent.

I’ve been active on various CFS message boards since 1999 and ignored people like Eric Johnson (Mold Warrior) and others who’ve claimed most CFS is caused by mold. Earlier this year, as my CFS was progressing to Parkinson-like symptoms and dementia, I took the online VCS test. Mold and some other types of toxic exposures reduce this specific type of visual acuity. I tested positive on the VCS, finally got into a very low-mold house and am slowly recovering.

My best guess is that less than 20% of homes and workplaces in the northeastern US have a low enough mold count for a CFS / CIRS sufferer to gradually recover.

Here's a study of mold / mycotoxins in CFS patients.

Regards,
Steve Bullock

I have no idea about the mold/mycotoxins theory (although, I'll grant you that my room could use a clean!), but how would a test that purports to demonstrate a neurological deficit be somehow specific to one caused by 'mold toxicity'?

Ie, if I were to test positive, why should that not be due to the effects of MS/neuro lupus / Lyme / etc?

 

[CantThink]

I haven't voted as 2 apply equally:

None of the above but I was fed up with doctors

And the financial constraints.

The reason I'd pick 2 - I'm in the UK so there's no M.E. specialist for me to see, and I became fed up of trying to deal with the doctors here such as GPs and endocrinologists.... They don't know what to do and tell me to accept how ill I am and give up.

In reality, if I had the money, I'd travel abroad and get help to eliminate or rule in issues, and to treat those things that are treatable.

 

[Tired of being sick]

13ff52f8

 

[Tired of being sick]

Everyone, here's a relatively inexpensive do-it-yourself test that may lead to a cure or great reduction in your CFS symptoms.

Go to the survivingmold.com website, take the online VCS (visual contrast sensitivity) test, then my time here is well spent.

I’ve been active on various CFS message boards since 1999 and ignored people like Eric Johnson (Mold Warrior) and others who’ve claimed most CFS is caused by mold. Earlier this year, as my CFS was progressing to Parkinson-like symptoms and dementia, I took the online VCS test. Mold and some other types of toxic exposures reduce this specific type of visual acuity. I tested positive on the VCS, finally got into a very low-mold house and am slowly recovering.

My best guess is that less than 20% of homes and workplaces in the northeastern US have a low enough mold count for a CFS / CIRS sufferer to gradually recover.

Here's a study of mold / mycotoxins in CFS patients.

Regards,
Steve Bullock

Dubious Diagnostic Tests - Quackwatch


Dubious Diagnostic Tests
Stephen Barrett, M.D.
Most of the tests listed below have little or no diagnostic value. A few are legitimate for some purposes but are used improperly for others. Those marked with an asterisk (*) are done primarily or exclusively by chiropractors. If you encounter a practitioner who uses or abuses any of these tests, you should seek advice elsewhere. Practitioners who do live cell analysis, biological terrain assessment, dental sensitivity testing, and cytotoxic testing in their offices are required to have CLIA approval for high-complexity testing. Except for freestanding commercial laboratories, blood banks, hospitals, and large medical offices, very few facilities have high-complexity approval. Only a few states restrict the use of unestablished laboratory tests. Nevertheless, if you encounter a practitioner who does these four tests and is not obviously running a laboratory, please ask your state laboratory department to investigate.


Visual Contrast Sensitivity Test to Detect Body "Toxins"

 

[Sushi]

I can't really vote on this. I see an ME/CFS specialist who is also a researcher. He is still looking for answers; I am still looking for answers. He is very open-minded and dedicated. Meanwhile the treatment I am receiving is helping considerably.

Sushi

 

[Hip]

@dan062, what actually are you symptoms, mental and physical? That is usually the starting point. (You my have posted these elsewhere, but your profile is not accessible, so I cannot access your other posts).

If you look at say the following lists of ME/CFS symptoms, which of these symptoms do you have?

Dr. Berne’s Chronic Fatigue Syndrome (ME/CFS)/Fibromyalgia Symptom Checklist
Short (Really!) Summary of Canadian ME/CFS Definition


Note also that it is not generally the severity of the symptoms that determines whether you might have ME/CFS or not, because this disease can vary greatly in severity. You can have mild, moderate or severe ME/CFS:

NHS Encyclopaedia: Chronic fatigue syndrome

Most cases of CFS are mild or moderate, but up to one in four people with CFS have severe or very severe symptoms. These are defined as follows:

Mild: you are able to care for yourself, but may need days off work to rest.

Moderate: you may have reduced mobility, and your symptoms can vary. You may also have disturbed sleep patterns, and sleep in the afternoon.

Severe: you are able to carry out minimal daily tasks, such as brushing your teeth, but occasionally you may need to use a wheelchair. You may also have difficulty concentrating.

NICE guidelines

The degree to which CFS/ME affects a person's functioning and daily life.

People with mild CFS/ME are mobile, can care for themselves and can do light domestic tasks with difficulty. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often take days off, or use the weekend to cope with the rest of the week.

People with moderate CFS/ME have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work, school or college and need rest periods, often sleeping in the afternoon for 1 or 2 hours. Their sleep at night is generally poor quality and disturbed.

People with severe CFS/ME are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive difficulties and depend on a wheelchair for mobility. They are often unable to leave the house, or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed, and are often extremely sensitive to light and noise.