Dr levine wants lab at labcorp, worth it?

[Alvin2]

The people who are being treated by long covid doctors have not been happy with the results, in my support group. Their optioms
Are way less then
What we have acculated here. Basically everbody with long covid is taking supps and vitamins and or fasting. From
What i can tell
Thats it.

That
Being said, i def woudlnt mind a long covid doc at all.

I'm sorry to hear this. Its a very new discipline and research takes time while covid is quite new. That said chasing ME/CFS if you have long covid is an example of the streetlight effect
https://en.wikipedia.org/wiki/Streetlight_effect

 

[bensmith]

I think my issues are more classic cfs, i didnt have a “normal” post covid journey it seems. I do
Imagine i have some speicific covid quirks. Esp now they think its persistant.

i would def take a long covid doctor, but i know a few who have them in my group,
The care isnt there yet it seems.

 

[bensmith]

@Alvin2 fair point, but i dont know what would make long covid cfs different than norma
Cfs?

i have severe mental pem, that seems more cfs than long covid.

in all my time on the long covid boards i havent seen anybody with mental pem(i dont think anyway.). But mental pem is somewhat common in cfs.

I do hope to get involved with any treatments for long covid, i just havent seen any yet.

 

[Alvin2]

@Alvin2 fair point, but i dont know what would make long covid cfs different than norma
Cfs?

i have severe mental pem, that seems more cfs than long covid.

in all my time on the long covid boards i havent seen anybody with mental pem(i dont think anyway.). But mental pem is somewhat common in cfs.

im sort of confused by your rathonal.

I think my issues are more classic cfs, i didnt have a “normal” post covid journey it seems. I do
Imagine i have some speicific covid quirks. Esp now they think its persistant.

i would def take a long covid doctor, but i know a few who have them in my group,
The care isnt there yet it seems.

We don't know yet if covid causes ME/CFS. It might which would actually be great for ME/CFS research because money would then come pouring in. But we cannot go on faith, we need to do more (time consuming) research to figure out if they are related.

 

[bensmith]

fair.

on another note. Dr levine wrote my script for upright mri, do you think she would write to the insurance to justifiy it as well? She just sent me the script so far.

 

[Alvin2]

fair.

on another note. Dr levine wrote my script for upright mri, do you think she would write to the insurance to justifiy it as well? She just sent me the script so far.

I have no idea, i'm not a patient of hers.
Do make sure in writing that its covered because you want to try to fend off a huge bill afterwards.

 

[Learner1]

did, she gave me famvir. Didnt really see much beyond higj ebv and i think hhv6. I wish i wish we did more honestly.

If you have both EBV and HHV6, You might look into Valcyte (valganciclovir) which is effective for both.

Its been hard for me to work with her, she seems super busy and like, not super attentive to me as a patient it feels. She isnt bad, just like i wish we did more testing.

The top ME/CFS specialists are extremely busy people with many very ill-patients. You will get the most out of them if you drive the process yourself. Be organized detailed your symptoms state your concerns and ask specific questions. There's a lot of information here on this forum to help you find a strategy that most out of your doctor. They will not be like your GP, but they know a lot more about immune systems and infections And you will have the best shot at getting better with their help, so best to work to manage the relationship.

This is just an opinion but if you have long covid then ME/CFS testing/treatment is unlikely to be in your best interest. We do not know if they are the same condition and the research on long covid is is progressing much faster with far more resources than ME/CFS research. I personally think you need to find a long covid practitioner.
It may not be easy to find one but the best alternative is likely not being tested for a condition you probably don't have.

We don't know yet if covid causes ME/CFS. It might which would actually be great for ME/CFS research because money would then come pouring in. But we cannot go on faith, we need to do more (time consuming) research to figure out if they are related.
If you are going to spend money you can't spare and perhaps make yourself sicker chasing a condition you may not have your likely going to be worse off for it.

My email box is filled with news from ME/CFS advocates around the country who are tapped in to what's going on with long COVID. Though there is a set of long COVID patients who have heart, and lung, and blood vessel problems, There seems to be a great deal of overlap between ME/CFS and the rest of the long COVID characteristics and the NIH and others are comparing the two.

But, just as every ME/CFS patient has some subtle and not so subtle differences between genetics, pre-existing infections, and other environmental factors, long COVID patients will as well. These are complex illnesses with many components, and there's not going to be a quick fix. The longer one is ill with ME/CFS the lower the chances of eventual success. not to say some people don't get better at any point in time, but it's difficult! The best that I believe that one can do is to learn as much as you can about your individual situation, with excellent testing and apply treatments to the various problems that are found. Many of us have gotten a lot better this way, and I would suspect, as long as there's not physical damage that you're dealing with, that it will be possible to improve quite a bit. The other factor is people blow through their resources over time and then end up on Medicaid and then it's very difficult to make any progress.

. Dr levine wrote my script for upright mri, do you think she would write to the insurance to justifiy it as well? She just sent me the script so far

generally, the MRI people won't do the test unless they know it's going to get paid for. They will send a pre-approval to your insurance, and if there's a problem, they'll likely call you. At that point doctor might be asked to do a peer-to-peer consult with your insurance to explain why the test is needed and get approval.

 

[Jenc]

Some of the trip's purpose is to do a couple of tests - CPET and upright MRI. I don't think the tilt table will be on this trip but we may do the simpler version to see what shows up. We agreed that with insurance claims, it would be better for us meet in person for her assessment.
I've started on the antivirals and read somewhere they they take a while (months?) before it is clear if it working. I guess as I slow down all the other parts of my lie, slowing down expected response drugs just fits right in.

@Anncomingtogrips
I hope you've got some answers since you posted.

Can I ask where you had your CPET done? was it a 2 day? or just 1 day?

Thanks

 

[Anncomingtogrips]

I had the 2-day CPET with Betsy Keller in Ithaca. I had some PEM afterwards but it was not terrible. It has been valuable for me in a couple of ways - on the disability insurance side, it gives some concrete explanation for my fatigue and dysautonomia - Dr. Keller writes a very clear report. I've also been using the information on my energy thresholds to try to manage my energy - I use a garmin for tracking heart rate, etc. and base my measures that I track from her report. My impression is that the two days is important for seeing the PEM impact. I have had M.E. for under a year and the differences from day 1 to day 2 were not as great as they might be for others - but it was still helpful.

 

[Jenc]

I had the 2-day CPET with Betsy Keller in Ithaca. I had some PEM afterwards but it was not terrible. It has been valuable for me in a couple of ways - on the disability insurance side, it gives some concrete explanation for my fatigue and dysautonomia - Dr. Keller writes a very clear report. I've also been using the information on my energy thresholds to try to manage my energy - I use a garmin for tracking heart rate, etc. and base my measures that I track from her report. My impression is that the two days is important for seeing the PEM impact. I have had M.E. for under a year and the differences from day 1 to day 2 were not as great as they might be for others - but it was still helpful.

thanks for that info!

 

[max_yazhbin]

No symptoms. I had post viral fatigue for 4 or 5 months from covid, then started pem maybe 5 months ago, minor. Then huge crash since last 4 months. Very severe since.

Feel I’m the only person ever to go from normal to severe that fast.

@sometexan84

I just found this, I never had PEM or CFS from covid as I was able to find a treatment that eliminated the cytokine storm, in this case gumweed

 

[Breagjam]

I had the 2-day CPET with Betsy Keller in Ithaca. I had some PEM afterwards but it was not terrible. It has been valuable for me in a couple of ways - on the disability insurance side, it gives some concrete explanation for my fatigue and dysautonomia - Dr. Keller writes a very clear report. I've also been using the information on my energy thresholds to try to manage my energy - I use a garmin for tracking heart rate, etc. and base my measures that I track from her report. My impression is that the two days is important for seeing the PEM impact. I have had M.E. for under a year and the differences from day 1 to day 2 were not as great as they might be for others - but it was still helpful.

I have had ME under a year as well and am going through a private disability insurance process. May I ask if you hired an attorney? Also if you traveled a long distance to Ithaca? Such as needing to book a flight? Were there hotel accommodations very close to the testing site?

 

[Anncomingtogrips]

I did work with an attorney and it helped a lot - Jason Newfield - in New York. (I live in North Carolina). It was easy to find accommodations close to the testing site. My partner drove so I didn't have the strain of traveling. (And we rented a huge suburban to give me space to stretch out as needed). I recall info on flights so I expect that is possible as well. I recently was notified that I was approved for my long-term disability claim - hooray! I'm now in the process of applying for SSDI - which the private insurance will use if I get it to offset their responsibility. I'll be glad to respond to other questions - either through this thread or through individual messaging.

 

[Riley]

I realize I’m way out of date here, but it is possible depending on where you live to get an independent in home phlebotomist to draw labs and deliver them to labcorp for processing.

 

[bensmith]

Yeah i have been trying to do this too, but it’s difficult for some reason.

 

[rel8ted]

Yeah i have been trying to do this too, but it’s difficult for some reason.

If you had a family friend with nursing credentials they may be willing to help you out. It will really just depend on if they have access to supplies that they can take home. I have a phlebotomist friend that drew for me when I was too unwell to leave the house.

Did you check with Labcorp to see if they do in-home draws?

 

[Rufous McKinney]

anti-viral (EBV and HHV-6)

what are you taking for that?

 

[bensmith]

I asked them if i could do it myself/buy supplies but they got wierd about it.