Who has done 2-day CPET?

[SDSue]

There's a lot of talk about the 2-day CPET, but I'm not sure how many of us have actually had one. Mine is rapidly approaching, and I'd love to hear other's experiences. For example:

Were you on meds at the time?
Did the meds seem to affect your results?
What was your level of functioning prior to test, and did it change after?
Did the test results show an abnormality?
Was it required for/helpful in your disability claim?
Etc.

Basically, any information would help me, as I am a bit stressed about this. I'm hovering between a 2 and 3 on function scale, so can't really afford a relapse.

Thanks so much!

 

[NK17]

There's a lot of talk about the 2-day CPET, but I'm not sure how many of us have actually had one. Mine is rapidly approaching, and I'd love to hear other's experiences. For example:

Were you on meds at the time?
Did the meds seem to affect your results?
What was your level of functioning prior to test, and did it change after?
Did the test results show an abnormality?
Was it required for/helpful in your disability claim?
Etc.

Basically, any information would help me, as I am a bit stressed about this. I'm hovering between a 2 and 3 on function scale, so can't really afford a relapse.

Thanks so much!

@SDSue Just done it with the Workwell Foundation the past couple of days.

I'm currently taking Valcyte, started about 6 months ago, I've yet to see any improvement from it ;(.

I'm quite wiped out today and I hope the results will show that I'm not capable of holding a normal job.

Will be happy to report results and/or changes in level of functioning, which in the past year have been stagnating at a level 2/3.

 

[SDSue]

@NK17 It sounds like you and I are in the same place - 2 to 3 and trying to prove disability. It's a horrid place to dwell, isn't it?

There's absolutely no way I could do a 1-day a week job, as I can't even shower regularly. Yet here I am trying to prove I can't work full time. It's a battle I'm weary of fighting.

I really appreciate and updates on your condition post-test and your results. For all the theoretical talk of the 2-day, there sure aren't many of us who've had to undergo the test.

Thanks so much! Here's hoping you pop back quickly and find some relief from an antiviral!

 

[Gingergrrl]

@SDSue How soon do you have to do the test? I forgot if I already mentioned this to you but in case I didn't, Jennie Spotila has an excellent blog called Occupy CFS with an entire section devoted to her CPET test. She talks about how she prepared and recuperated and it's very detailed. She recommended getting saline IV's after the test if you can.

@NK17 Glad you are recuperating and praying that your test shows exactly what you need for disability. I am proud of you for doing it and sharing your experience to help others.

You know I love both you guys

 

[SDSue]

Thanks, @Gingergrrl , the blog you suggested was informative. I learned 2 things: 1. Request IV saline immediately after test (and get a once/week saline IV Rx for 3 weeks following test); and 2. Put support in place to prepare for the possibility of 3 weeks being bed bound.

I have some fears going into the test. First is that LDN treatment has somehow made me just well enough to "pass" the test, but not remotely well enough to work, which would leave me in a horrible position. Second is that it will crash me to a new low, from which I'm unable to recover.

It's insanity: Risk permanent damage to prove that you are unable to work.

PS: Love you too!

 

[SOC]

I have some fears going into the test. First is that LDN treatment has somehow made me just well enough to "pass" the test, but not remotely well enough to work, which would leave me in a horrible position.

Understandable. If it's any reassurance, I did a 1-day CPET when I was better than you are now and confident the test would show an improvement in my condition. It didn't. While symptomatic treatment was improving other symptoms (exhaustion, pain, cognitive dysfunction, sore throat, swollen lymph nodes, blah, blah, blah), the root problems with my aerobic dysfunction were still clear. In fact, my AT hadn't changed a jot from when I was much sicker. Even though I felt better, I was at something like 96% of my AT just sitting on the bike before the test even started.

Are you stopping any OI meds before the test? I don't know if they'd affect the test, but I'd want to check on that since the results of the test are critical for your disability claim. This is not the time to be feeling your best and brightest.

Where are you having the test done? Do they understand ME?

 

[SDSue]

@SOC - I'm having it done at the INIM in about a month, so I'll be in good hands. I'm gathering questions for the person who actually runs the tests and will get her advice regarding meds as well as my doctor's. Was yours done there as well?

Your experience is quite helpful and appreciated. I have a hunch my underlying aerobic dysfunction is still there, too (PEM, limited physical capacity, etc). One of my concerns is that my PEM isn't normally within 24 hours, but more like 48+ hours.

Because Midodrine raised my BP to a scary level after apx 1 month, I discontinued it and remain untreated until my next appointment. Prior to midodrine, my BP was always quite low.

Now, after a week off the drug, my BP is a relatively stable 135/95 sitting, but quite erratic standing (with low of 65/50 and high of 153/120). I have no idea how my nephrologist will treat this when it's so unstable, but I know he'll want to lower it to protect my kidneys.

Perhaps it was this unstable prior to midodrine, but because I didn't follow it as closely I didn't notice?

Could be a coincidence, could be the LDN, could be my kidneys are worsening, and it could be POTS was masking hypertension as there are people who are treated for both simultaneously.

And so it goes in the mystery we call "ME".

 

[golden]

Can you get this test done in the UK?

thanks

 

[SOC]

@SOC - I'm having it done at the INIM in about a month, so I'll be in good hands. I'm gathering questions for the person who actually runs the tests and will get her advice regarding meds as well as my doctor's. Was yours done there as well?

The first time I had a full-blown 1 day CPET at the Hunter-Hopkins Clinic. Then 4-5 years later, after Valcyte treatment, I had another CPET test done at INIM by Connie. That one was submaximal because I only needed to know my AT. I wasn't trying to prove disability.

Your experience is quite helpful and appreciated. I have a hunch my underlying aerobic dysfunction is still there, too (PEM, limited physical capacity, etc). One of my concerns is that my PEM isn't normally within 24 hours, but more like 48+ hours.

My PEM has always hit later than 24 hrs. For me there's a 3-4 day delay. Sometimes I've had exercise intolerance on a shorter scale, but the cognitive dysfunction, complete exhaustion, and flu-like symptoms always hit 3-4 days later.

Perhaps it was this unstable prior to midodrine, but because I didn't follow it as closely I didn't notice?

Sounds quite possible. I had no idea my BP and HR were so erratic until I started paying attention.

And so it goes in the mystery we call "ME".

Oh, how very true. Just when I think I know what I'm dealing with, another curveball comes flying in. It's an unending adventure. At least my "adventure" is going in the right direction these days.

 

[SDSue]

@SOC, Is Connie housed in the same building as the Institute in Kendall, or is she in Lauderdale? (I'm seen in Kendall) In my current state, it's always stressful to find a new location. Planning ahead sure helps!

I'll need to ask about the delayed PEM, and whether or not it affects the test. If it does, there's not much to do about it anyway, as I assume we have to follow protocol in order for results to be meaningful.

 

[SOC]

@SOC, Is Connie housed in the same building as the Institute in Kendall, or is she in Lauderdale? (I'm seen in Kendall) In my current state, it's always stressful to find a new location. Planning ahead sure helps!

I'll need to ask about the delayed PEM, and whether or not it affects the test. If it does, there's not much to do about it anyway, as I assume we have to follow protocol in order for results to be meaningful.

I saw Dr Rey and Connie both at the old Kendall location. I don't know where they are doing the the CPET testing now. Didn't they tell you when they made the appt? My guess would be Kendall if they didn't tell you otherwise, but best to check to make sure.

The 2-day CPET tests the metabolic abnormalities, not the resulting PEM, so I wouldn't think the delayed PEM would to be a problem for the purposes of a disability claim. My abnormalities were clear in a 1-day test and I have a long PEM delay compared to many patients.

Daughter and I are going to participate in some research in Oct. They'll do some pre-CPET tests (blood, maybe cognitive), then a CPET the next day, then the same blood/cognitive/whatever tests the third day. I'm a little worried that the PEM won't show up in next day blood and cognitive tests since, like you, I don't get noticeable symptoms until later. I'm guessing, however, that the negative process begins during or immediately after the exercise and something will show up on the tests even if I'm not noticing it yet. The same is probably true for you, too. There will be a testable effect on the second day, even if your symptoms are not serious yet.

 

[SDSue]

Daughter and I are going to participate in some research in Oct. They'll do some pre-CPET tests (blood, maybe cognitive), then a CPET the next day, then the same blood/cognitive/whatever tests the third day. I'm a little worried that the PEM won't show up in next day blood and cognitive tests since, like you, I don't get noticeable symptoms until later. I'm guessing, however, that the negative process begins during or immediately after the exercise and something will show up on the tests even if I'm not noticing it yet. The same is probably true for you, too. There will be a testable effect on the second day, even if your symptoms are not serious yet.

Wow, I'd delay my CPET to participate if possible. Do they have enough participants yet? Who is organizing? Seems like I could simply schedule at the end of the study and do my 2nd day CPET on the 3rd day of study.

Will it be in Kendall?

 

[SOC]

Wow, I'd delay my CPET to participate if possible. Do they have enough participants yet? Who is organizing? Seems like I could simply schedule at the end of the study and do my 2nd day CPET on the 3rd day of study.

Will it be in Kendall?

They're calling it "the NIH study", lol! It's being done through the VA in Miami. I don't know the official name. I've forgotten all the details since we signed up (darned memory), so I'm waiting to hear where we have to go for the different parts. I'm hoping it's all at Kendall, but I'm not counting on it.

Hah! I found a thread about it. I even posted on the thread. Life is always full of new things, even if they're old things, when you have ME.

A complete immune check-up for free and compensation for your time and travel will be provided". Please contact 305-575-7000 extension 6706 or 4942. E-mail: Fanny.Collado@VA.gov for complete information

The 3 visits are as followed:

#1 Screening Visit= you sign the consent, get initial blood work done and a physical examination

#2 Exercise Challenge test= you are here for about 7 hours, you get a stress test and multiple blood work is done.

#3 F/U Visit= you sign for payment and get your last blood work done.

I don't think they've got enough participants yet, so give Fanny a call if you're interested in participating. Looks like we'll have to go to the Miami VA for the testing.

 

[Singout]

Hi, @SDSue, wondering if you've done the test and how it went! I'm doing a submaximal in a few days and contemplating doing the full CPET.

 

[SDSue]

Hi, @SDSue, wondering if you've done the test and how it went! I'm doing a submaximal in a few days and contemplating doing the full CPET.

I'm still waiting. For some reason, the machine has been down for several months at the center where I need to perform the test. Thus, I'm on hold until further notice.

Best case scenario would be my disability being approved without it while I'm waiting. The aftermath of the 2-day really scares me.

Please do keep us posted on your sub maximal testing?

 

[SDSue]

@SDSue Just done it with the Workwell Foundation the past couple of days.

I'm currently taking Valcyte, started about 6 months ago, I've yet to see any improvement from it ;(.

I'm quite wiped out today and I hope the results will show that I'm not capable of holding a normal job.

Will be happy to report results and/or changes in level of functioning, which in the past year have been stagnating at a level 2/3.

Hi there! Did you get any results from you test? Thanks.

 

[Hell...Hath...No...Fury..]

Can you get this test done in the UK?

thanks

I also want to know this @golden a few months ago i did a nationwide search and made myself ill trying to find some info and coming up with sod all. I remember finding a fitness place that did a one day similar test but its not what we're wanting.

There must be somewhere in the UK we can do this?

 

[Gingergrrl]

@golden If you call Jarod at the Workwell Foundation he might be able to tell you other places where the two day test is offered. It is a long shot but only thing I can think of. His ph# and email should be on their website.

I spoke with him several times many months ago and was going to do the test but my former cardio and naturopath who were my main doctors at that time both felt I was not well enough to do it so I did not proceed.

 

[NK17]

Hi there! Did you get any results from you test? Thanks.

Hi SDSue, yes I've the results, verbatim:
NK17 demonstrates cardiopulmonary abnormalities, reduced function and symptoms exacerbation post-exertion. This severely limits the patient's ability to engage in both normal activities of daily living (such as making the bed or food preparation and cooking are beyond the limit of NK17's aerobic capacity) and sustained full time employment.

The two tests per se were not difficult for me, the after PEM has been an horrendous flare up in which I find myself more than 2 months after.

I don't regret doing it, on the contrary. I finally have an objective measure of how abnormally and sub-optimally I function.

My new PCP who has received the results has signed an application for a permanent disabled person placard.

I would have never thought to get to this point, while waiting for the report, I still had doubts about my functional capacity. Most probably because like many of us with ME I'd just got used to the never ending cycles of crash and burn.

A fellow sufferer comforted me by saying that like most PWME I would surely fail with flying colors!

If you have any other questions don't hesitate to PM me.

I hope you'll be able to do the tests soon.

Hang in there

 

[NK17]

I also want to know this @golden a few months ago i did a nationwide search and made myself ill trying to find some info and coming up with sod all. I remember finding a fitness place that did a one day similar test but its not what we're wanting.

There must be somewhere in the UK we can do this?

As @Gingergrrl has already suggested I would contact the Workwell Foundation and ask for a referral in the UK.

Dr. Chris Snell has done a long presentation about the CPET in PWME in Bristol (?) last year, the video of which is on Youtube.