Dr levine wants lab at labcorp, worth it?

[bensmith]

Ill need medical transport. Worth it? I cant imagine itll move the needle. I know she is one of the best. Frustrated she wouldn’t allow my home lab company to come to my house. Medical transport is expensive and is this even going to help? How many got labs and they improved becuase of what was shown.

and appatently my ambulance serivce in town made it illegal to use any other services, for stretchers. Hope they take me.

afraid how much this cost me : /

 

[Anncomingtogrips]

I'm seeing her and just had an extensive set of tests done through lab corp. You've been at this a lot longer than me so don't know how much more you will learn but I do believe she was very thorough. The person at lab corp said that she had never had anyone order some of the tests before. If you move forward with it, I hope it will reveal something promising for treatment and worth the expense and pain of the transport.

 

[bensmith]

@Anncomingtogrips what trearmenr did she start you on?

 

[Anncomingtogrips]

anti-viral (EBV and HHV-6), monitoring Sjogren's syndrome. Also prescribed LDN. Nothing particularly unusual in my case. Most of the tests were negative. I'm traveling to NY in January to meet with her (I've posted elsewhere about long-distance traveling) and I hope to more fully address treatments.

 

[bensmith]

@Anncomingtogrips sorry for my ignorance but what do you hope to achieve but travelling there, does she want tat from her patients eventally.

any improvement on those virals? I am on ldn its helping a bit. Just started 3 today.

and ive only had cfs for 4 months maybe 6. You are the vet here i think! : )

 

[Anncomingtogrips]

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.

 

[bensmith]

Cool, thanks. Hope it helps.

 

[sometexan84]

and ive only had cfs for 4 months maybe 6. You are the vet here i think! : )

Do you mean it's only been 4 or 6 months since you were diagnosed? Or that's how long you've had symptoms?

 

[bensmith]

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

 

[leokitten]

Is there a Labcorp blood draw location close to your home?

 

[bensmith]

@leokitten. Yes. Still not exactly feasible at my level but ill prob do it.

 

[wigglethemouse]

Have a look at Labcorp Lab in a Box to see if that service would work for you. There is an email and phone number on this page
https://www.labcorp.com/provider-services/other-services/home-healthcare

 

[bensmith]

god thank you.

 

[leokitten]

Labcorp Lab-in-a-box isn’t useful here there is a limited set of tests that can be done this way and likely doesn’t cover most of the tests needed for ME/CFS diagnosis and treatment guidance.

https://files.labcorp.com/labcorp-d8/2019-10/16060_Lab-in-a-Box Test Menu update_FINAL.pdf

 

[bensmith]

Fuck : (. Not sure im capable right now so crashed. Big decision. Afraid this will knock me into tube feeding. Starting to feel jaw and body “give out”. Family wont allow that. Not sure.

 

[Ladycreole03]

Ill need medical transport. Worth it? I cant imagine itll move the needle. I know she is one of the best. Frustrated she wouldn’t allow my home lab company to come to my house. Medical transport is expensive and is this even going to help? How many got labs and they improved becuase of what was shown.

and appatently my ambulance serivce in town made it illegal to use any other services, for stretchers. Hope they take me.

afraid how much this cost me : /

Did you get your results or did you go?

 

[bensmith]

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

 

[leokitten]

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

As a patients of hers I can tell you you have to drive what you want and do the research etc. When you bring up the case for tests or other things then she will usually agree if there’s objective reasons behind it.

 

[bensmith]

Ok cool, thats good to know.

 

[Alvin2]

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.